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!

My doctor called me back to say that the link we are looking at isn't the protocol they follow. She has printed a copy of their protocol and I'm picking it up tomorrow. It worries me why it's so different.

toastntea, dont be too worried your tsh is not too high but it does need to be lower and hopefully the 50mg is working I'm sure everything is fine.

It is so bad that esp in the UK that you have to fight all the way for proper treatment, I was misdiagnosed by the NHS on my thyroid for 16 years which caused my thyroid to shrink due to damage, I learnt the hard way now I only see private drs about my thyroid esp drs which have trained in the states, it cost a lot but to me my health is vital.

bebemad thanks for the reassurrance, there is so much conflicting info about and so many things that are related to the condition - honestly sometimes its aworry about our Drs!

Hi, my test results came back and at wk 9 of pregnancy my tsh is 4.22 and Serum T4 is 16.49. My GP says that this is well within the range during the first trimester. What would you advice I do next? I have my mid-wife appt tomorrow. As far as preg symptoms, I do not have any vomiting or nausea - though I feel like my day goes by in a daze - I can't concentrate on work and nothing works like sleep - I feel like I can sleep at the drop of a hat. I am currently on 75mg of thyroxin and have been on this dosage for many years now.

womanlytales I am 11 weeks today and just come back from the endocrinologist at the ante-natal clinic. I am also on 75mg and got my bloods today: FT4 15.7 and TSH 4.40 -similar to yours. The consultant has now put me up to 100mg based on those results to try and get my TSH down below 2.0. I was originally on 25 mg and my bloods 6 weeks ago were a scary TSH 7.60 and FT4 12.8. I am now worried that I may have done damage to my baby in that early period, but not a lot I can do about it now I guess. As I had already got info from mumsnet, when I found out I was pregnant I took it upon myself to book a blood test with the practice nurse without asking my GP first! My then clueless GP said that the aforementioned results were fine. However, I knew they weren't and so rang the community midwife and she wrote to the consultant at the hospital who then got a nurse to ring me back a week later to increase my dosage from 25 to 75 and arranged my 6 week follow-up today. This was easier for me to do as I had consultant led care last time and so the midwife was happy to do so. But maybe you could try talking to your midwife tomorrow, they are more aware of thyroid problems in pregnancy and whilst they can't prescribe, they can refer you to consultant led care and can ring the hospital for advice on your behalf. I'd take a copy of the guidelines with you as back up. BTW I have rubbish sickness and deadly tiredness, but I did last time too and I didn't have any thyroid problems then...

I'm not sure of my levels at the minute but I'm 8 weeks pregnant and taking 75mg a day.

Over the last week or so I have the sensation of a lump in my throat when I swallow and I feel there's a little pressure there.

My GP wasn't that concerned when I told her I was pregnant (although she did up the dose from 50 to 75mg). I have an appointment at the beginning of October to check my blood - as I have this wierd sensation should I ask for this to be moved forward?

thanks

womanlytales how did you get on today?

ilovespinach your GP seems to know about putting your dose up, but maybe you could get your bloods a bit earlier? Depends when they upped your dose as they usually like to have 4-6 weeks on your current dose to see what effect it has.

Re: lump in throat, it could be thyroid related as I think the thyroid gland enlarges in pregnancy in all women anyway? But it could easily be reflux/heartburn - very common in pregnancy and this is a common symptom of it, I get it sometimes.

i am 33 and have been hypothyroid for 7 years following a miscarriage (may have already had it before and been the cause of the miscarriage - they're not sure) - took average 6 months to conceive. I had no extra tests or scans during first pregnancy and everything was fine- i think i slipped through their radar! With second i had one blood test per trimester - it was no big deal for me - my levels have always been regular and changed only slightly during last trimester. Now i get checked once per year. interestingly my consultant says 0.5 - 5.5 is normal !

I did go with this to my mid-wife who referred me to a doctor who had a printout saying the upper limit for tsh is 3.7 but refused to up my dosage saying it's just border line!! Now they have referred me to an endocrinologist but i do not see them till oct 07 - the good news is they have taken all the bloods... uni the doc said that its only antibodies that penetrate through to the child and cause thyroid related issues...were you tested for those? it is incredible how everybody's experience is so diverse on this...

I've spoken to me gyne and she wasn't so concerned. She said it's ok to wait for the original blood test next week and it would only be dangerous if I stopped taking the meds.

Why does it have to be so complicated ? :)

ilovespinach totally agree, am fed up of being an interesting patient! Sounds like your gyne was reassuring.

womanlytales at least they're keeping an eye on you so if your TSH goes up, they can up your dose. As for it affecting the baby, if you're seriously undermedicated or undiagnosed then this increases the chance of miscarriage and can lead to a child with learning difficulties. I've since had a chance to look through some research that confused2011 posted earlier - it was really helpful and had reassured me that at the levels I was at, it's unlikely to have done any real harm. I saw a consultant last week and they mentioned about antibodies and I'm getting tested for those. In my case, it's because although I'm now underactive, I was overactive in my 20s and the antibodies for Grave's can pass to the baby and make them overactive too. I'll have to have extra scans and extra measuring of the heartbeat later to make sure this isn't happening. Having said that, no-one seemed to be bothered about this with DS and I didn't get extra tests and he turned out fine!

All this anxiety and I don't even know for sure there's one in there yet, my scan's not till Wednesday.

I have an underactive thyroid and take 125mg levothyroxine - before pregnancy it was 100.

It hasn't made any difference to my pregnancy and has no influence on the labour.

I have had my levels monitored monthly in the endocrine unit. They explained that it's only in the first few months that it's crucial to get the medication correct. After that the baby has its own thyroid. Because my problem is not genetic, there is no danger of the baby having thyroid problems.

The endocrinologist told me that the only danger in pregnancy with thyroid problems is if the patient has severe under/overactive AND if she refuses to take medication. In that case there is a chance of learning disabilities. If you go to all appointments and take the medication as prescribed, there's no problem.

Overall, it is nothing to worry about. Phew!

Hi

I'm new to Mumsnet and have been TTC for 4 months. I have had Hypothyroidism for 7 years, which has been mostly under control. I had bloods done on 10 August and my TSH was 4.11 and T4 was 16.0. I had been taking 125mg or 150mg (alternative days) but increased to 150mg daily to reduce my TSH levels a bit.

I had another test on Thursday (22 September) and my T4 was 19, but my TSH had shot up to 15.5. I've been sleeping badly in the last week and had a night sweat (I'm 32) so thought my TSH was going to be at the lower end of Normal. I did a pregnancy test today, but its negative. Its day 28 for me, but my cycles vary from 28 days to 32.

Does anyone know why my TSH has shot up so much??? I am really worried as I expected the TSH level to have improved (given I was taking a bit more thyroxine). Its all making me feel miserable.

Any help / advice would be very welcome! Thanks in advance

Hi,

i have been diagnosed with a under active thryiod about 8 months ago and am taking 50mg levothroxine, i am now 13 weeks pregnant and have not increased by dose until today to 100mg

the reason i didn't increase before was becuase the doctor refused to do a blood test when i visited in at 6 weeks pregnant (when i found out), yesterday i visited a endocrinologist who took tested and told me to increase to 100mg straight away

my question is would i have done any damage to my baby as i am really scared.

deepa

It is odd that your gp wouldn't help you, I thought it was standard to increase dose when pg. However, as I understood it damage would consist of being more likely to have early mc - which clearly hasn't happened to you! Your dose is still quite low so your levels can't have been that far off. Make sure the specialist sees you again at intervals and ask him/her about your concerns.

igggi,

thanks for the advise, it is a great reliefe.

anyone else have experience for a second opinion?

deepa

Hello,

I'm new here and have come across this blog whilst frantically trawling the internet. I'm soooooo confused with all the info and stats, that I don't know what to do? Can someone help me please?

I have an under-active thyroid and have been taking thyroxine (100mcg) for the last 13 years. I am currently 12 weeks pregnant with my second child and have still yet to see a midwife or a consultant! With my first pregnancy, my dose was immediately increased to 125mcg by my then doctor, I was 6 weeks pregnant at the time. This seems to be the norm right? I then fell pregnant a second time, but sadly miscarried at 6 weeks.

This is now my third pregnancy and due to light brown spotting at 6 and 8 weeks, I saw my doctor who referred me to for an early scan. At this point my doctor commented on how in my previous pregnancy (which was trouble free by the way!), I should not have had my thyroxine dose increased so early. This confused me somewhat, as my doctor at the time was head of the Thyroid unit at my local hospital and this was further backed up when I saw a consultant at my 12 week scan. My doctor asked that I take a blood test but at no point did she tell me to increase my dose. I rang my doctors for my results, as I have heard nothing. On the 6th Jan, my results were as follows; T4 13.4, TSH 3.8 and T3 4.2. Apparently no action was needed.

I have since been waiting to see a midwife (my first appointment), which is tomorrow. I will be 12.5 weeks. I presume I will then have to wait a further couple of weeks before I finally see a consultant and have my dating scan.

Feel like I'm slipping through the loop here and being left. Should I have been more pushy with my doctor and had a second opinion? Do my results sound ok? Worried that I should have had my dose increased earlier and that this may be detrimental to the baby and brain development.

Could someone give me any advise before I send myself into a tis?

Many thanks xx

Hi, sorry for what's happening with you, really surprised it is all happening so slowly. If you are having the NT scan doesn't that have to be by 13 weeks? I'm not too sure.
Thyroids though I do know about. I've seen the endocrine specialist about mine in this pregnancy, and was advised to increase my dose by 25 (for second time, first being as soon as I knew I was pg) as he wanted by tsh to go down to about 2.0 and the t4 to be between 14 and 18. I think your levels aren't great, that doesn't mean I think you have harmed your baby at all but I think you are not at optimum levels and might feel worse than you need to. I would take 25microg extra myself if I were you but then my GP is used to me telling her "after the fact". I think your first doc was much more on the ball! I do think it's time to start being a bit pushy, it's for your baby after all. Getting to 12.5 weeks is a big achievement, I do think things are going well for you but that you deserve more care! (You are in UK by the way?)

Hello igggi,

Thank you for your kind reply. Yes, I'm in the UK. I know, it's been so much more of a drawn out process this time :0( Well, as I had an early scan on the 10th Jan (due to the spotting) at 8.5 weeks, I guess that kind of delayed things and they couldn't get me a midwife appointment until tomorrow (7th Feb). Then I would imagine, the midwife will arrange for my NT scan - sooner rather than later I hope! Another doctor at my surgery is going to call me at lunchtime to go through my test results from 6th Jan. After reading all the threads and guidelines - see link www.cks.nhs.uk/hypothyroidism/management/scenario_preconception_or_pregnant#481050006 my results as you say, aren't great and the 'No Action Needed', must be questioned! I'm terrified that I might have caused damage to the baby in not being treated sooner and that the baby may be more susceptible to IQ defects. I feel like crying I'm so upset... I've read it's so important that the dose increase happens in the first trimester and after that it's not so important, as the baby's own hormones take over. So is it too late for me - has any possible damage already been done? I just don't know why my doctor refused to increase my dose and why she questioned the previous consultants when they did so. She was so adamant about it! I am 'normally' very pushy and like to be on the ball with everything. So naturally I am beating myself up about this :0(

I found below these interesting snippets of information, which put my mind at ease a little...

"Another point worth noting and of utmost importance is that supplements containing iron will impair the absorption of thyroid medication, so a large gap between dosage should be observed. E.g If you take your thyroid medication in the morning, leave at least 6 hours before taking an iron or multivitamin supplement containing iron."

I take Sanatogen Muti-Vitamins for pregnancy before I go to bed and then my Thyroxine first thing in the morning. So I was relieved to read that I do always leave more than a six hour gap between taking the two.

"Women with an existing treated hypothyroid condition have no more chance of birth defects in their baby than anyone else. So, if you have been reading about things like low birth weight, low IQ, miscarriage, birth defects, still birth etc, it should be noted that this is only in women with untreated hypothyroidism who are unaware that they have the condition and where TSH tests have not been performed to identify this."

See website -

www.well-women.com/Pregnancy.html

That is really interesting about iron, my GP has just prescribed 3 doses of iron a day for me, didn't mention probs with the thyroxine - will be quite hard to separate 3 lots of iron from the thyroxine by 6 hours!
Please try not to worry OP, your levels may not be great but they aren't terrible either (I remember having a T4 at 11 when pg with ds, that was untreated and he isn't displaying any problems with IQ that I can see!). And in fact, your earlier levels may have been better - my t4 has been dropping througout my pg (2nd trimester now) so the levels when the baby needed it most were actually ok.
Good luck with the midwife - and welcome to Mumsnet!

Thank you for your advice and kind comments. It's such a relief to know someone out there is listening!

Well, I phoned my GP that same day, after getting into a panic over my TSH level and asked why my previous GP hadn't increased my Thyroxin medication. I was armed with the following facts; UK guidelines suggests an optimum TSH level of between 1 - 2 when pregnant, with a cut-off of 2.5. When you are NOT pregnant, a TSH range of between 0.5 - 5 is considered 'normal'. As my TSH is 3.8 and I AM pregnant, this is too high and therefore my Thyroxin should be increased!

My GP said she would call the Obstetrician, do some research and get back to me that evening. Well, I got the call back and she concurred that yes, I should increase my dose immediately from 100mcg to 125mcg. She made no apology for the error that the previous GP had made in not doing so earlier. She wasn't aware that the 'normal' TSH range narrowed almost by half for when you are pregnant, compared to when you are not. Thus the reason 'No Action Needed' was stamped on my blood results! Wow - can you believe it? Worrying isn't it? It just goes to show that you cannot take everything that GP's say as red and these are very experienced doctors we're talking about here and they've never come across this before??? I think this had been one big learning curve for her too!

My biggest fear of course was, had any detrimental damage been caused to my baby's brain development due to the lack of Thyroid hormones in my first trimester? I've already had a miscarriage, which for all I know could have been the contributing factor! But who can say for sure?

My GP explained that even though my TSH levels were moderately high, my T3 and T4 levels were within the 'normal' range for when you are pregnant (the ranges in your first trimester should be T3 = 4 - 8 and T4 = 11 - 22). It is these two hormones that the baby needs a sufficient amount of for healthy development. As TSH is a 'Thyroid Stimulating Hormone', my TSH of 3.8 fortunately hadn't effected my T3 and T4 levels and therefore she couldn't see how this could have caused any detrimental effects to the baby.

So I now feel sooooooooooo much happier. I finally got to see the midwife for the first time yesterday and she was not impressed by the lack of care I had received up to now. She assured me that things were going to get better and couldn't apologise enough for all the incompetency and delays I'd experienced. I will be of course consultant led from now on and my midwife urgently put in a request at the hospital for me to have an NT Scan (the cut-off is 14 weeks) and I'm 12.5 to 13 weeks! They'd better hurry!

Bring on the second trimester I say and let's hope it's not as stressful!

I hope my facts and figures can help others too. Please feel free to get in touch, I will be more than happy to try and help with any info I've picked up so far.

Good luck and take care to all Mummies!

Mrs DDG xxxxxxx

Hi all and esp Mrs Doolinlady, thankyou for your advice - finally some clearer guidelines! This is the first time I've ventured onto mumsnet trying to find answers regarding pregnancy and thyroid.

I'm 35 and have only been ttc since Jan. I've had an underactive thyroid since I was 20, ironically after starting the pill. I've been on 125/150 alternate days for a few years, till this year when I upped my exercise etc prior to my wedding in Oct! I dropped to 125 and have felt great this year.

Last week a strange period / possible pregnancy prompted me to visit the docs,( it wasn't) and I went again tonight after the report on thyroid in early pregnancy at the end of the radio 4 prog Medical matters last night ( on iplayer, last 10 mins). I need to listen to it again in the light of what my doc has said as I think some bits were a bit misleading and vague (such as raising meds by 25 to 50 percent).

Basically she said that as soon as I know I'm pregnant I need to go for an appt immediately for bloods etc and i'll be referred to hospital and they'll take it from there. I requested a blood test now to get a clear picture as the last one was at Christmas but only tsh - can't remember what, poss 3.8. My usual doc last week said that being the higher end of normal range was good for ttc. (not sure if was tsh or t3/4, poss the latter) However as the doc today pointed out if its too high you could run the risk of not ovulating etc.

I think my local nhs is pretty good and on the ball so I am trusting their judgements at the mo. At the very least your doctor should be aware of the importance for good control before conception and also early monitoring during as soon as pregnancy is confirmed.

Thanks for the note about iron and thyroxine and if anyone has any further advice it will be greatly appreciated!

Best of luck to all xx

I'm not usually one to worry and have already been refered to a specialist due to my underactive thyroid. However after visiting my GP today for the results of my first blood test taken during pregnancy and him telling me that he didn't really know the effects of my underactive thyroid and pregnancy, I'm feeling slightly anxious!

I'm 8 weeks pregnant, on 100mcg which has not been increased and the results from my recent test are

Serum free T4 level 11.3 pmol/L (7.0 - 17.0)
Serum TSH level 3.67 mu/L (0.40 - 4.50)

I take it from reading previous posts that this result is far from ideal?

I had no idea that this damned thyroid disorder could cause so much havoc on pregnancy, as if we don't suffer enough with it.

Thanks for any comments.