Underactive thyroid and pregnancy

[cumbria81]

I was diagnosd with an underactive thyroid last year and have been taking thyroxine. I have never had any of the usual symptoms (I don't have a weight problem and rarely feel tired) so the diagnosis was a bit of a surprise.

However, I am now thinking about ttc and know that hypothyroidism can cause problems in pregnancy. I've been doing some googling (always dangerous!) and it's quite scary - miscarriage, birth defects etc.

Has anyone with an underactive thyroid been pregnant and what were your experiences?

many thanks!

tugs I must admit I think if I were you id have a similar gut feeling, but that's just my opinion and my gut. At 17 weeks when I still felt crap they were ok with tsh below 0.5 and t4 being I think 20 or 21, can't remember, and left it. (plus the other obs consultant at the btf meeting said it was ok for that stage though may find in third tri I need to come down, however at that point no-one knew about the teva drugs) But I do worry about not being in the slightest bit medically trained and giving advice based on what happened to me.

Could be clarella, though I've been on 150mcg for about 3 years and my tsh was a stable 1.5 until I got pregnant, when I've gone slightly hyper! DH reckons the baby just has a kick ass thyroid to make up for my crap one :o

It is really confusing, and so much of the dosing seems guesswork which is really unnerving. I think staying off work is sensible for both you and your kids, 6 weeks isn't that long :)

Thanks fluffy, much calmer now.

Goes to show how different everyone's thyroid is. Doc said last night it's a very peculiar thing that is hard to fully understand or explain. Not helped by dodgy meds!

i was diagnosed with an underactive thyroid 2 and a half years ago. i currently take 100mcgs of thyroxin a day. my last pregnancy was 6 years ago now and went great. i came off the contraceptive pill 6 weeks ago and am now 5 weeks pregnant!! (took 1 go! finding it hard to believe myself)

i was unsure if my positive pregnancy test results was due to my hormones from coming off the pill but the doctor assured me over the phone that he would believe me to be pregnant. i am going into see the gp in person tomorrow. reading posts, i am quite worried about my blood levels. i have never really took much interest in them. all i wait for is the girl on the other end of the phone to say 'your fine'. usually when i get my blood checked, i have to wait 3 days on results and then another 3 days on a prescription (if needed)

i can honestly say though that i am feeling a lot tireder in the evenings. normally i would be quite tired all day but still able to sit up to all hours of the morning watchin my tv shows. but over the last few days my eyes are burning come 9pm at night and i end up heading to bed as i start to feel ill with tiredness.

im worried about having to get special care at the endo clinic but on a happier note, my diabetic sister also attends the clinic regurarly as she is 5 months preggers. shel b a bit of company for me (when i eventually tell her)

also, that sister is also the person in the hospital lab who checks the blood tests so i can get my result instantly from her via txt.

fingers crossed for tomorrow

sorry this was soo long

Congratulations!

Please don't worry Hannahi87, from what I've gleaned many people have few issues and some, and you'll see on this thread, haven't had to change doses much or even at all. Well managed it's not really a risk and also remember the issues for baby are more in low iodine countries and in women who are subclinical. The guidance is to raise by 25-50 mg on bpf (see bta website and nice guidelines) keeping tsh below 2. if id had the guts back in march that I have now id print it off to show the doc but hopefully your doc will be fine. I'd recommend the pregnacare pregnancy vit as it has a low level of iodine if you can take it, and/or make sure you try to get lots of dairy (if you can stomach it!)

Congratulations again! X

www.cks.nhs.uk/hypothyroidism/management/scenario_screening_of_asymptomatic_people/view_full_scenario#-482785

nice guidelines x

This is my first Mumsnet post! I was inspired to join having found this thread on a search.
So I was diagnosed with hypothyroidism about 6 years back I guess. We've been trying for a baby for 2.5 years with no success at all. In that time my thyroid levels have been checked a few times, partly as procedure and partly as part of investigations resulting in a diagnosis of 'unexplained infertility', so probably not due to my thyroid function.
I don't actually know what my levels were last time, though I think I have a print-out somewhere. I have to confess I really don't know the ins and outs of it all anyway, but was told the levels were normal and have accepted that; I think one 'score' was 0.? - would it be TSH? Is that the one which needs to be below 2?
Any way, I'm on 150mg of levothyroxine and am bricking it for when (yes, 'WHEN') I finally get pregnant, that my levels are maintained and that I get regular checks. I shall probably make a complete nuisance of myself!
So that's me, just saying 'hi!'

Clarella.

the doctors went great yesterday. at my last blood test (3 weeks ago) my Tsh was 0 and my t4 was 1.2 so the docs confident that i am well managed and shoudnt have much to worry about. will know more when monday comes. the bad part of the visit was being told that i had no choice but to tell my employers. i did so last night unwillingly as its sooo early. at least it gets me out of all the manual labour i normally do. i just really hope that the news doesnt spread! will know more on monday.

Hi Sizzlet

This is my first post here too! With thyroid issue the 'low' is when it is 2+ (that is bad) as it is measuring the chemical that triggers the thyroid gland. this means that the bigger that number the harder your body is having to work to get adequate thyroxine. So, if your level was 0.? it means you are probably fine as that is a good level and your body isnt working hard to get enough thyroxine. If you were at 5 then your body is working much harder. in preg Best bet is to speak to a doctor or nurse though and ask them to explain it as you should always keep an eye on the levels.

I too am TTC, although only a few months in. I've been underactive for around 10 years now and have been pretty stable for 9 years, just gradually upping my dose every few years when it dips. I had a great doc who let me say what my levels should be, and as long as they were in the normal range he was happy for me to dose as I saw fit which was great as I know myself better than they do! Now i've had to change docs and I dont really know them so not sure on their viewpoint on this.
I'm thinking I may go to the docs to find out about if there is anything I should be aware of with TTC with underactive thyroid and what to expect in pregnancy if/when it happens. I dont want to be overly paranoid though. Can I ask how many of you actually went for a ttc check-up? Did you just get bloods taken to check levels or did you actually go to the GP for a chat?
Thanks!

Hi Hannah, sizzlet and lerryn!

Hannah, lerryn said a tsh of 0 is good, t4 is harder to track accurately as it varies during the day. The guidelines state to keep tsh below 2 and t4 in the upper reference range but as I said this can be a bit arbitrary - the range I believe is from about 9 to 22 ish, so the higher end is ideal although everyone uses and processes t4 differently - some people have been fine with it a little lower (as their tsh shows) some need it a little higher. Are you taking any extra? It's the current guidelines to up by at least 25mg on bfp but with your doc may have decided to leave it with such a low tsh. If you are not I would definately have another blood test at around 8 weeks, really you should be getting one every 4 weeks during the first trimester. (next time I am every pregnant I will be asking/demanding every 2-3 weeks simply as it changed so quickly for me!) Some (most) people are absolutely fine and others seem to rollercoast very quickly. Knowing more about your condition might help the docs/consultant for example if you have ever had any antibodies. I actually didn't really notice a lot of tiredness as my levels were rising until they were much higher at 13 weeks to tsh 11.

Sizzlet, I never knew my levels till a few years ago as I seemed to be easily affected by very small changes and appear to wobble both ways from time to time. It can be helpful to get your head around tsh and t4 so that you understand what's going on and yes a tsh of 0 would be very good. I'd been below 1 for over a year (had had to drop meds a little) and didn't know this was best for ttc! It sounds like you are being well managed and don't worry about not being treated correctly - you will probably be fine, its a small group of people who seem to get the clueless gps! To answer your question I only found out about it all via a radio 4 programme as I possibly fell pregnant the first time in Feb - this was possibly an early miscarriage so I went to chat about it all with the gp. my usual one seemed to think it would depend on a blood test when upping and as my previous test 3 months before was 0.5 tsh he thought I may not need to take more I just asked if I could get another test (happened to be right at the beginning of my cycle) and it was 1.5. I must admit I worried a bit as the program had been very clear the guidelines say to take an extra 25/50mg on bfp and saw couple of other docs (couldn't get an appt with him) and one admitted she had no clue, another said only when they knew I was definately pregnant. This confused me even more! I wished id just printed out the guidelines but was trying so hard not to fuss! In the end I went to the doc who had said she'd put me up but I didn't get a positive test at the docs (and then they lost one!) till the end of 5 weeks. I'd guiltily taken a couple of extra 25's at 5 weeks and was worried but have since been told by an obstetrics consultant she'd prefer women to be trusted to take an extra 25 on bfp. Next time I will just do this!

Basically I would have a chat with doc and perhaps take some info just incase. From what I understand they should be informed you are ttc if have a thyroid problem. I would also ask for regular blood tests during ttc, probably every 2-4 months (depending how stable you usually are) and and clarify that tsh will be kept below 2, but that sounds fine. You may be very lucky and have a clued up doc who will suggest all this! You will be referred to the obstetrics dept when you have your booking appt and generally get seen at the first scan around 12-14 weeks, but the most changes occur during the first trimester (if atall) so you need docs to be on the ball. However there is no reason why you couldn't be referred earlier if needed. Oh and take pregnacare as has a small amount of iodine in it.

All the best! Xx

well i got my blood tests back from thursday, my t4 was still 0 but my tsh had jumped up to 3.78. i wasnt happy about that as the doctor noted no further action even though that was drastic and its not to go above 4.2. so i booked myself in to get more tests done today. if they have gone up again then il b going to see about upping my dose of thyroxin. and iv got high blood pressure. lil bit worried. also, if there was an olympic category of sleeping id get gold medals all round. hope everyone else is keepin well

Hannah, I'm a little confused by your t4, 0 can't be right, the range is something like 9 - 22 (can vary) but they aim for the upper numbers in pregnancy and tsh is supposed to be below 2, I would ring the receptionist to clarify those scores, but I'm obviously not a doctor. Good that you've booked more tests though, and tbh a tsh of 3.78 isn't horrendous, mine went to 5.5 at 8 weeks then 11 later on even with extra medication. (i did freak though!)

Just thought id say, im now 12+2, had my ultrasound friday just gone, all looks good :-) So far had an increase of 25mg since week 5/6, had another blood test last week, just waiting on results.

Congrats mrsc81! sorry missed your post last week.

More and more I'm realising my particular rollercoaster ride is not the norm - after reluctantly agreeing to drop again ( dropped to 200mg from 225mg at 22 wks, then to 175 at about 26 weeks) my tsh has come back at 0.05 still (though I think it was 'below 0.05' last time) but t4 19.7 (last time 18ish) - I was really not expecting this but must say I really felt as if my levels were coming down the first 2/3 weeks but the last few days have felt better. Consultant on weds, I'm really hoping I can stay at this level though doubt ill be allowed. More and more thinking (hoping but also cross about) it was the brand of thyroxine that was the problem.

I know someone (fluffy?) mentioned they'd not actually changed their dose during pregnancy and then had gone a bit hyper towards the end - I wonder if that's happening here!

One question; I've asked a few times about anything different happening towards the end - mini you mentioned extra scan at 32 wks and fluffy I think I saw on a pregnancy thread you're being induced at 38 wks, I've not been told about anything like this and I think I asked outright about extra scans. gonna ask again on weds but just wondering if these were for other reasons or thyroid related?

One more thing, I saw in the British thyroid foundation that there's a London meeting coming up on thyroid in pregnancy soon if anyone is interested and lives around there.

Hope everyone is ok xx

Hi Clarella, yes they said they would give me an extra scan at 30-something weeks (might have been 32, 34 or 36 I can't remember) to check on growth because hypothyroid can be linked to slow growth.

In my case that has kind of fallen away though, as I was found at the 20 week scan to have single umbilical artery (bit of an oddity, means umbilical cord has 2 blood vessels instead of the usual 3). This in itself is a reason for 2 extra growth scans. So I am having growth scans at 28 and 36 weeks because of the SUA. The thyroid extra scan is no longer necessary as the growth check will be covered by those.

But before they knew about the SUA they definitely said I would have an extra scan at 30 something weeks because of the thyroid. Do ask.

The only other "extra" thing is that I am seeing a maternal medicine consultant (not an endocrine consultant) every trimester to keep an eye on my levels. Next appointment next week (28 weeks). I don't know if I'll have another one after that.

Nothing has been said about induction, I guess that might happen if the growth scans throw up a problem?

By the way I'm another one who has not changed dose during pregnancy - stayed at 50 mcg throughout. Blood tests have shown TSH in the range of 1.10 to 2.15 and T4 in the range of about 12 to 14 so all basically fine, perhaps not quite as good as ideal but I felt fine so didn't increase. I am taking Pregnacare and I always eat lots of dairy (I try to eat miso soup a lot too) so hopefully that helps.

Ah thanks mini, sorry to hear about your cord problem, I think I missed that on the antenatal thread, do hope all is going well. i'll ask again but starting to suspect it currently may depend on which nhs trust you're under. I've been seeing the obstetrician consultant (or registrars) almost every 2-4 weeks to try to stabilise the levels but really noticed all the changes either when hypo or hyper and every drop they've done, whereas the big increase at 13 weeks up to 225 when Tue tsh was 11 (originally 125) took a good 5 weeks for me to feel any better

Yes, I'm partial to a little miso soup too! If you can stomach mackrel I've been told that's a good source of iodine also but with pregnacare its prob fine to just have dairy. Incidently, there was a big consultant review of iodine in the UK witness regards to thyroid function and also during pregnancy etc reported on the latest btf news letter but not sure if its on the website yet. Some countries supplement it the way we do with some nutrients and there's worry about dairy consumption amongst certain age groups esp girls and young women.

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Clarella the endo has decreased my thyroxine by 25mcg to 125mcg, so I'm now on less than pre-pregnancy. I've been told I can have a sweep at 38 weeks but I don't want one so will politely decline til 40w and will be induced at 41+4 if I'm still pregnant by then.

Oh wow fluffy, really reassuring as if I keep going like this each 4 weeks I too will be on less than I was! And good to hear you had/have an option on the sweep. Thanks :)

Yeah the endo didn't seem to think it was a problem and just told me to have my bloods done again when baby's 6 weeks old (I'm 37+3 now so it won't be done again while I'm still pregnant) to see if there's any change. I'm a bit worried about my TSH skyrocketing when I'm no longer pregnant as I understand it can affect milk production but I can't find any info online about at what point it becomes an issue (i.e. TSH of 6 or 26??)

Not long now! How are you feeling? Yes I imagine ill feel the same if waiting 6 weeks. Tbh I think my doc would let me get a test sooner given how fast levels have moved previously. The problem with finding out if there's a level at which tsh affects bf is that firstly everyone seems to cope/react differently to different levels and secondly its not an easy scientific test to conduct - no women are going to agree to allowing to become hypo and its hard to work out at what point/ tsh level someone who they've identified as hypo and affecting bf triggered the milk to stop or not engage.

I've only come across what's been mentioned anecdotally here regarding bf - the only other thing I know is you need even more iodine for bf but I guess (not looked yet tho) the pregnacare bf may have more, though im also guessing dairy cravings during bf could answer that one! My cousin(in law) is currently doing a study of iodine levels in newborns and nursing mothers.

Consultant/registrar tomorrow. Am considering asking for a week or two of alternate day doses if they want me down again, but doubting they'll agree as I suppose that just delays the tsh recovering.

I didn't realise dairy was high in iodine - I've been craving ridiculous amounts of the stuff while pregnant; I usually get through a pint of milk, at least ones cheese sandwich and a large (450g) pot of yoghurt every day

Pregnacare original and pregnacare breastfeeding have the same amount of iodine in them - thank god, as pc breastfeeding comes bundled with fish oil which makes it expensive :o

Good luck with the consultant - I got discharged :o so they're clearly not worried about me...

Hi all
Just back from consultant. TSH 2.5, T4 16.5, on 275mcg for last 4 weeks. Put myself up to 275 from 250 because I wasn't happy with my last results... Doc I saw today just said "fair enough" when I told her I'd upped my own dose!!
I'm happy with latest results, especially as the TSH may go even lower by the time I have my next test in 5 weeks as my levels continue to adjust. What do you wise ladies reckon?
Clarella how did your appointment go?

Well fluffy, cravings probably for a reason! I wonder what chocolate is for?! I too have been a cheese junky. In the UK dairy is the best daily source (slightly ickily I think cos they wipe the teats with iodine,) slightly different amounts in winter and summer milk but nothing to shout about.

Bizarrely a relative is a,research scientist in the area of iodine which I only recently found out! Particularly looking at status in women, girls, teens and pregnant/new mothers and babies. She told me that:

during pregnancy, your requirements increase to 250ug per day. You can get approx 150 ug from your pregnacare type of tablets and can complete by having a good intake of dairy / fish. If you do not take supplements, you need to make sure that you get your three servings of dairy per day, and fish at least twice a week (but limit oily fish - best is haddock).
Dairy is also important for bone health, as if you do not have enough calcium, your brain will send signals to your bone to start demineralising / leach calcium.... fun! It is also important to make sure that iodine intake is adequate while you are breastfeeding too.

Didn't know that about the bf pregnacare, I got round that by asking which fish oils would be equivalent to the duo pregnacare pills in Boots and it turned out to be cheaper to buy their low dose fish oil capsules with normal pregnacare

My baby brain routinely replaces similar nouns - I meant haddock not makerel! I'm sure its been said before (probably by you) but its best to take pregnacare 4 hours apart from thyroxine. unless you are a strict vegan its really hard to be iodine deficient now.

Great you've been discharged though fluffy!

Good for you tugs, and a good call too. If you feel ok that sounds good - I forget how many weeks you are? I really think that despite my 2 drops since 22 weeks and levels have remained the same shows that baby was using less and less. I'm 30 wks now, Ive been told its 'around' 26 weeks baby's thyroid hormones kick in.

My appt was very good. She was actually happy to leave me at that dose if it was going to worry me as she said that although bugger all tsh (its actually still below 0.05), I'm still well within range for t4. Ultimately they want me to drop but as you can literally hear the giant lost marbles rolling on the floor when I talk obsess about levels they try not to push me! She said the same as the btf consultant, that, although not ideal, in thyroid cancer patients they have to completely suppress tsh anyway. So I opted to do alternate days drop (175/150) which she was fine about, though I may actually do it for only 2 wks then go to 150. Sound ok? I was on 125 pre preg so reckon I can slowly nudge towards that or the alternate 125/150 I was on 2 years ago?

She showed me a graph of results over the last year to date, (more marble collecting strategies!) I didn't realise how very hyper I was last year (t4 over 25) but an alternate day drop sorted that from 125/150 to just 125. Though the probs getting t4 tests in early preg mean its not a very accurate graph! She also offered a scan without me asking, apparently it depends between different nhs areas if its straight Hypothyroidism and not strictly necessary but she thought it would be helpful (for said marbles) I thought a bit greedy initially but then remembered all the taxes I've paid! If anything she was extremely good at tidying marbles. ;)

One more thing I'm a little cross about was id been told by my community mw at 8wks that i'd have to be 'upstairs' in the doctor led maternity unit, but this was apparently not true, though I will be there now due to the ups and downs and nutty anxiety. I don't feel worried about birth though. I'll be going to full term etc as a normal pregnancy :) might even be lucky enough to grab a pool!

Sorry mammoth post. I was always shit at keeping to word counts and so don't do haikus or twitter ;)

Thanks clarella. Am 22+6 now. Sounds like your appt went well and the alternate days drop is the way forward.

I was automatically offered extra scans at 28 and 36 weeks, and at my hospital they do a routine scan at 32 weeks as well, so i'll be having 3 more scans. Feel v lucky!

I didn't know that about taking thyroxine and pregnacare 4 hrs apart, I always take mine about half an hour apart... Hopefully it's ok though?! Interesting also about the amount if iodine in dairy, explains my milk (and chocolate?) addiction!