Would you like to be on Mumsnet's research panel? We're especially keen for parents-to-be and new parents to join. You can sign up here - there's (nearly) always a great incentive on offer for your views.

Pg with under-active thyroid?

(35 Posts)
Christelle2207 Fri 07-Dec-12 21:32:20

Hi, I have been TTC for 1 yr, eventually got diagnosed underactive with TSH of 8.9, started 25mg levothyroxin in October. Am convinced that thyroid had something to do with difficulty getting pg but that's another thread.

5 weeks later (4 weeks ago) it had come down to 5.5, dosage (after pushing for it) increased to 50mg, then last week I got my BFP!! I am now between 5 and 6 weeks, I think.

Going for next blood test on Wednesday. GP seems to think that under 4 is ok but dr google is convinced that if pg you need to aim for between 1 and 2.5.
Worried that she won't give me any more prescription if I get down to about 4 though has admitted that I need to get checked more regularly when pg.

Any others out there with hypothyroid- what TSH is safe in pg and do I need to worry about my baby (other than normal worrying of course!)

Thanks

MyLittleAprilSunshine Fri 07-Dec-12 22:35:47

I don't know a lot about it, I must confess. I have always had a very borderline thyroid, which is a bit of a nightmare. Being slightly above 2.5 wont put your baby at risk, but you don't want to be above it by a lot. The GP probably doesn't want to put you on too high of a dose of medication when pregnant, which is understandable. You need to keep the communication going and find a right balance of healthy for the baby and best for you.

DontSayWhatSayPardon Fri 07-Dec-12 23:21:39

Get referred to a consultant early on. I was told by 2 consultants that tsh needs to be below 1 in pregnancy. 2 GPs have told me 2-3 is fine. Fortunately because I'd seen a specialist I could push back on the GPs. Tbh I don't actually know the effects of TSH being slightly too high in pregnancy. I don't think it harms the baby, I think it's the mother that suffers with the usual symptoms. But either way best to get dose right if you can. Good luck.

Tugstonia Sat 08-Dec-12 08:02:41

Agree you should be referred to an endo or obstetric consultant asap. In my experience GPs tend to think TSH below 5 is 'normal' but actually should be in the lower range (0.5 to 2) in pregnancy and tested/monitored much more regularly than normal. Do you know what your T4 level is? You usually need 30-50% more thyroxine in pregnancy. Bear in mind it takes 4-6 weeks for the levels to adjust so possibly your next blood test will show TSH has come down again. Don't hold back on pushing for more regular tests or specialist advice - you know yourself better than any doctor.

RileyTheLittleMonster Sat 08-Dec-12 09:04:32

Hello, I'm about 6 weeks and I've got an iver active thyroid! I've not seen any one yet as my first appointment isn't until 27th, but my Gp said I need to be seen ASAP. Do It's worth seeing someone and congratulations! smile

Push to see an endocrinologist asap - if you get deferred onto a standard waiting list ring your midwife unit and get them to push things forward. Pre 12 weeks if your levels are way off it can adversely affect the baby. Post 12 weeks the baby makes its own thyroxine, so although you may feel dreadful it will be fine. Early monitoring matters, and many GPs are not up to speed on this.

It is normal for dose to be raised by 50% on BFP.

Don't let them ignore you, keep calling until someone takes notice.

DejaB00 Sat 08-Dec-12 09:45:15

You need to be referred. I developed hypothyroidism after having DS and have been on 100micrograms/day for 2 years (I have a very lazy thyroid!). The endocrinologist told me I'd have to get referred again as soon as ttc again, which we will be as soon as my implant is removed next week, and gp has already agreed to the referral. As far as I understand it you need a higher dose when pregnant, hypothyroidism does not harm baby but could harm you.

BartletForTeamGB Sat 08-Dec-12 09:49:43

www.endo-society.org/guidelines/final/upload/Clinical-Guideline-Management-of-Thyroid-Dysfunction-during-Pregnancy-Postpartum.pdf

These are the guidelines we use. Yes, in pregnancy (and ideally when TTC), we aim for TSH < 2.5. You should be referred to an endocrinologist, although a GP should (but I appreciate doesn't always) be able to manage this in the meantime. It is really, really common for your dose to increase significantly during pregnancy.

No, hypothyroidism CAN harm the baby pre-12 weeks, when the foetus is entirely reliant on maternal levels. Post 12 weeks it isn't a problem, but early monitoring really does matter.

digerd Sat 08-Dec-12 10:59:26

If the Hypo is very low in Thyroxine, as was my sister's, she had no periods at all for 4 months. Supplementing with Thyroxine surely will avoid any problems if dosage is correct.
Very Overactive, as I was, also stopped my periods for months. It depends on how serious it has become. Underactive is easier to treat than Overactive, especially when pregnant.
Riley
Your Gp must refer you as urgent. Not sure how it affects the baby, but the danger is to you depending on how overactive your Thyroid is, as causes increased heart and metabolic rate among other problems

BartletForTeamGB Sat 08-Dec-12 11:14:46

"No, hypothyroidism CAN harm the baby pre-12 weeks, when the foetus is entirely reliant on maternal levels. Post 12 weeks it isn't a problem, but early monitoring really does matter."

Just to clarify worsestershiresauce's statement:

We know that untreated hypothyroidism can be harmful both before and after 12 weeks, although I'd reckon that there were minimal risks associated with a TSH of 5.5. That's why we tend to treat it a bit more aggressively in pregnant women than we might normally. It is also important that TSH levels are maintained <2.5 throughout pregnancy as there are risks associated with overt hypothyroidism. Again, these risks are probably minimal in borderline hypothyroidism.

Riley, if you have an overactive thyroid, you must be seen by an endocrinologist already? I always tell my patients to call us when they get a BFP so I can arrange to see them early and adjust things, so your team would likely want to know. To be honest, the appt on the 27th is probably fine, because I would ask you to get your bloods checked and then give you advice over the phone before then.

The link to the guidelines above should help you too.

Christelle2207 Sat 08-Dec-12 11:31:20

thank you all, esp Bartlet, was feeling slightly alarmed bt some responses. GP made it clear that it would take at least three weeks to see how levothyrixin was working and that giving me more than 50 mg without knowing what effect it was having may send me "over" active instead. also i think a good chance my levels will be a lot lower than 5.5 this time anyway so not going to panic but will ask for referral, if GP not keen i have private insurance so may go down that route.

BartletForTeamGB Sat 08-Dec-12 11:37:26

Your GP is right about not checking TSH any more frequently than 4-6 weeks after a dose adjustment, so that doesn't concern me. Because your thyroxine requirements do go up in the first trimester, your TSH might not have shifted that much, but I don't think it is much to worry about. You'll just need more thyroxine and a referral to an endocrinologist (which should be on the NHS, your GP must refer you whether or not he/she is keen!). Most hospitals have joint diabetes/endocrine antenatal clinics with the obstetricians seeing you as well in the same clinic.

www.gpnotebook.co.uk/simplepage.cfm?ID=1120927771&linkID=74028&cook=no&mentor=1

www.gpnotebook.co.uk/simplepage.cfm?ID=x20110412170927938474&linkID=74051&cook=no&mentor=1

mercibucket Sat 08-Dec-12 11:39:18

I am no expert but it sounds like we have one on this thread, which is ace

Yes, your underactive thyroid could well have played a role in the time taken to conceive

Normally on levo you would want a tsh below 1 and t4 top of the range, possibly over.

Then, with those levels, you would increase by 25mg immediately on finding out you are pregnant, then increase further as needed based on blood tests throughout pregnancy and after speaking to the consultant

So, based on your results, yes, you are going to need a pretty quick increase in meds, but as you've got the blood test on weds, wait til then, and then start the increase. Well, that's what I'd do.

Do you have a copy of -understanding thyroid disorders' by dr toft (endocrinologist, specialising in thyroid, published by bma)? You can get it in boots. P 55 as soon as you are pregnant, visit your doctor who will probably increase your thyroxine dose by 25 mg. Show this to your GP. It says it is most important in early pregnancy.

mercibucket Sat 08-Dec-12 11:39:18

I am no expert but it sounds like we have one on this thread, which is ace

Yes, your underactive thyroid could well have played a role in the time taken to conceive

Normally on levo you would want a tsh below 1 and t4 top of the range, possibly over.

Then, with those levels, you would increase by 25mg immediately on finding out you are pregnant, then increase further as needed based on blood tests throughout pregnancy and after speaking to the consultant

So, based on your results, yes, you are going to need a pretty quick increase in meds, but as you've got the blood test on weds, wait til then, and then start the increase. Well, that's what I'd do.

Do you have a copy of -understanding thyroid disorders' by dr toft (endocrinologist, specialising in thyroid, published by bma)? You can get it in boots. P 55 as soon as you are pregnant, visit your doctor who will probably increase your thyroxine dose by 25 mg. Show this to your GP. It says it is most important in early pregnancy.

BartletForTeamGB Sat 08-Dec-12 11:49:44

"Normally on levo you would want a tsh below 1 and t4 top of the range, possibly over."

This isn't right in normal circumstances. Assuming primary hypothyroidism, we just watch TSH aiming for it to be in the lower half of the normal range (so usually less than 2.5) and don't really watch T4.

If you have an underactive thyroid because of pituitary problems, then we watch T4 (because TSH, which comes from the pituitary, is going to be completely unreliable), aiming for it to be in the upper half of the normal range.

The Endocrine Society guidelines are based on the most up to date research and consensus so those are what to brandish to the GP!

mercibucket Sat 08-Dec-12 12:06:19

Lol Bartett, I am guessing you are on the other side of the fence, so to speak, and you know what most hypo people on the net think of the endocrine society and its guidelines, but I don't want to fight over the whole tsh thing on this thread. If you don't know what people think of it, watch the youtube vid about the holy tsh.

The important thing for the op in this case is that her tsh is already nowhere near either 2.5 or under 1, and an immediate increase in meds is called for when pregnant.

I still highly recommend that book as an easy for your GP to understand reference. My GPs eyes glaze over when I produce endo society guidelines, clinical knowledge summaries, bma best practice etc.

mercibucket Sat 08-Dec-12 12:06:19

Lol Bartett, I am guessing you are on the other side of the fence, so to speak, and you know what most hypo people on the net think of the endocrine society and its guidelines, but I don't want to fight over the whole tsh thing on this thread. If you don't know what people think of it, watch the youtube vid about the holy tsh.

The important thing for the op in this case is that her tsh is already nowhere near either 2.5 or under 1, and an immediate increase in meds is called for when pregnant.

I still highly recommend that book as an easy for your GP to understand reference. My GPs eyes glaze over when I produce endo society guidelines, clinical knowledge summaries, bma best practice etc.

BartletForTeamGB Sat 08-Dec-12 12:26:53

I'm well aware of what a very small but vocal number of people think about TSH! That is not the view held by reputable biochemists and endocrinologists across the world!

Her TSH really isn't far off (I've seen far more impressive TSHs in pregnant women!) and she is having it appropriately monitored by her GP and then, we hope, by an endocrinologist, and will have it treated appropriately, we hope.

I don't think scaring the OP is very helpful when really we are just talking about optimising things rather than having to rush into major treatment changes.

mercibucket Sat 08-Dec-12 12:52:50

Well, if you see an increase of 25mg as a major treatment change, I don't really know what to say to that. Or the idea of waiting til after the blood tests on wednesday before starting the increase as rushing.

Anyway, as it will not be helpful to the op to argue, and as we are saying more or less the same thing in any case, I will bow out of the thread. I will however say that it is important with NHS care to push for the treatment that is recommended, as it is far to easy to fall through the gaps. As the increase in meds is most important in early pregnancy, it is good that the op is being proactive and finding out what needs to be done.

Incidentally, as the op has just started her levo treatment, it is normal practice to test t4 alongside tsh. I assume the GP is already doing this.

Op, as an aside, have you also had your ferritin, b12, folates and vit d levels tested? There could be room for improvement on those as at least one is often low when hypothyroid and it is best practice to get them tested. You would take vit d anyway during pregnancy but I would ask for a blood test to check levels as you might benefit from a larger than normal dose.

Op, I really hope I do not come across as scare-mongering to you. I would just like you to have optimal treatment and wish you a happy and healthy pregnancy

BartletForTeamGB Sat 08-Dec-12 13:08:23

Checking T4 in hypothyroidism is not normal practice. Doubling up the dose of levothyroxine in the last few weeks in borderline hypothyroidism does need to be monitored & it sounds like that is happening.

You clearly have your own views about the management of hypothyroidism in pregnancy but I suggest we leave this to people who are caring for the patient in real life & have both the qualifications (which I certainly have) and the full facts of the patient's history, examination & results.

Bartlet - you sound like a clued up health professional, but unfortunately many of us do not have people such as yourself monitoring our pregnancy. My GP referred me on and took no further role. My referral ended up on a standard NHS waiting list, so it just sat there for months. In the end I saw a private obstetrician about something else who was horrified that my hypothyroidism was being ignored. He wrote to my GP, who agreed to raise my dose 50%, but did not chase things with the endocrinologist. Eventually I rang the birthing unit, and the midwife managed to get me fast tracked up the waiting list. I finally got to see someone at 26 weeks. Pretty poor I think you'll agree.

It is entirely possible my baby has been harmed, so I don't think I am scare mongering when I tell people to take control of this themselves, chase things up themselves, and not blindly trust the health professionals. Hypothyroidism in pregnancy is not something all GPs are up to speed on. I actually had to explain it all to a friend of mine who is a qualified GP. She had a hazy idea that thyroxine dose should be raise 'a bit', but not why it was important.

Christelle2207 Sat 08-Dec-12 14:34:08

Ladies, I really did not want to cause an argument! I do appreciate all your thoughts though. The bottom line is that my dose was doubled just after I became pregnant (though didn't know it) and Wednesday is exactly three weeks after I started the 50mg so testing before then probably wouldn't give a clear picture as to how much TSH was improving. Therefore my plan is to push for further dose of levo (unless I have gone below 2) and referral to endocrinologist.

sauce I'm sorry you had a shitty experience and hope that your baby is ok. I'm not going to panic now but will make sure I get on the right track when I speak to gp after blood test results.

bartlet assuming I do get the issue fixed over the next few weeks and in the event my TSH has not (yet) improved, would you still say the risk of problems related to this are low?

BartletForTeamGB Sat 08-Dec-12 14:56:50

worsestershiresauce, I entirely agree that Christelle needs to be seen by an endocrinologist and have given her links that confirm this should the GP be reluctant. It really wouldn't worry me not seeing her until the 27th, as long as bloods are being checked every 4-6 weeks and levothyroxine is adjusted to aim for then maintain TSH<2.5. I do a lot of it over the phone anyway, making changes with the patient that way.

It drives me nuts that it is ignored, that people don't realise that it does need sorted, so I do always try to come on threads like these to make sure that people know the facts and the links. The Endo Society guidelines are what GPs should be working to, so I link to them very regularly so patients can brandish them at GPs and can badger their GPs with when they need blood results! smile I have no objection to and encourage patients to know what needs done, when and why.

FWIW, I also have a thyroid problem and have needed extra monitoring during my current pregnancy. It has annoyed me when the Obs consultant told me that my TSH doesn't need checked again when it does, so I do appreciate the frustrations of dealing with people who don't know the specialist stuff. (I have avoided an endo referral though, but the reasons for that are obvious when things are currently uncomplicated!)

As for the risks of your hypothyroidism, christelle, without knowing your complete story and all the usual caveats, I would be very surprised if your borderline hypothyroidism translated into significant clinical effects for your baby. It does need looked at and it does need the advice of an endocrinologist reviewing you, but I really want to reassure you that I wouldn't normally expect problems as a result of your sort of blood results.

Testing your TSH 3 weeks after a dose adjustment is very early under normal circumstances, but I can understand why doing it early is sensible in your case. If your TSH is anything over 2.5, I would be surprised if your GP wouldn't put up your levothyroxine dose again, aiming for repeat bloods in 4-6 weeks.

But, to reassure you again, your bloods are only a little out of range and I really wouldn't expect any problems at this level.

Christelle2207 Sat 08-Dec-12 15:13:02

Bartlet I really appreciate your advice, didnt expect to find an expert on here but clearly did. Will update!

Christelle2207 Fri 14-Dec-12 19:46:05

Hi, well after 3 weeks on 50mg, my TSH is down to 3.9 and gp thinks under 4 is "normal range". This may be so but I pointed out the guidelines from the society (need under 2.5 when pg) which he kind of acknowledged. He didn't want to increase my dose, believing that my levels are on a "downward slant" and probably haven't levelled since my increase in dose, this I understand after just 3 weeks. But on pushing he did increase me to 75mg. Won't refer me :-( but did ask me to bring it up with midwife (appt is next week as it happens) who may apparentley send me to either an obstetrician or endocrinologist.
Meanwhile I am to go back for tsh test every month.

Eletheomel Fri 14-Dec-12 19:55:26

Think Bartlet has done a great job of setting things out here, just wanted to add my own personal experience.

This is my second pregnancy, and in both pregnancies I was told (by the hospital as where I live most of my antenatal care is done by local hospital) to immediately increase my thyroxine by 25mcg once I knew I was pregnant, and to have a blood test after.

They checked my blood again at 13 weeks and increased me by another 25mcg and I go to get my bloods checked again in a weeks time.

I've not met my consultant yet this time (will meet him at 20wk scan) but last time he told me he wanted to keep my TSH between 1 and 2.

I'm sure you'll get good care, but I know my local GP seemed surprised by the hospitals suggestion of increasing my thyroxine immediately before a blood test was taken (my last non-pregnancy TSH level was 3.1) and ended up asking me questions about what happened regarding my thyroxine levels in last pregnancy.

So it's good to have advice from Bartlett to back you up, in case you come accross a health professional who may not be that up to speed why underactive thyroid in pregnancy

BartletForTeamGB Fri 14-Dec-12 22:29:03

Grr, you do need to be seen by an endocrinologist and I (because, let's be honest, you've only got my word that I am one! grin) am not good enough via MN!

Next TFTs in a month sounds fine - if anything, a bit too frequent as TSH 'needs' 4-6 weeks to settle down.

Glad you have a dose increase though. Sure the midwife will refer you on to one of us!

ReikiMummy Fri 28-Dec-12 21:33:58

Wow... now slightly panicking as my underactive thyroid has been more difficult to control than a bunch of hyperactive schoolchildren at alton towers (I know - definitely a mixed metaphor there).

definitely not borderline underactive either as was previously on 150mcg, and have been upped to 175mcg on finding out pregnant. Still - i get to see the Obstetrician (sp?) mid january, so will have lots to ask.

Thank you Bartlet for your input.

Christelle2207 Tue 15-Jan-13 13:25:30

Hi
Just wanted to update. I am now 11 weeks pg and at the end of December my TSH was down to 2.1 which is obviously a vast improvement, thanks to 75mg. I am back for more bloods next week and at my midwife appt she put me on "shared care" which means some of my antenatal appointments are with an obstetrician so I have my first of those in early Feb. Both the midwife and gp seem completely unconcerned though, I feel it's up to me to keep an eye on things.
reiki would be interested to know what your obs said?
Best of luck all
x

ReikiMummy Wed 23-Jan-13 20:03:16

Well I saw the Obs today - and my case is apparently a little different I think.

I'm not being monitored so much for being on Thyroxine, but because initially I had an overactive thyroid. (I was sent underactive when I was about 19 or so as being overactive was not playing nicely with meds).

If I've had an overactive thyroid - apparently there could be antibodies in my system that can affect the LO. So - more bloods today, and then will see where we are. Now slightly more worried and trying really hard to stay away from Dr Google - but wait for next communication from Obs.

The only thing I can say though Christelle is to ask absolutely ANYTHING you're worried / concerned / even remotely thinking about. The Obs I saw today was really lovely, and even tried to let me hear the LO's heatbeat - bit futile with a anterior placenta at just 15 weeks tho!

Let us know how you get on with your Obs appt. Early Feb will be here before you know it! x

photographerlady Thu 24-Jan-13 10:15:06

You are right 1 and 2.5. is ideal for first trimester. I started out 1.9 and went up to 2.2 at 15 weeks. The baby has its own thyroid now but I insist that at every MW appointment I get a blood test for t4 and tsh. I would ask your GP to raise you to 50mcg or 100 (I'm on 100mcg). Tiredness is going to bite you throughout your pregnancy, having low thyroid levels is only going to make that worse.

photographerlady Thu 24-Jan-13 10:15:56

oh just read your update glad your levels are down smile

Christelle2207 Mon 29-Jul-13 13:14:14

Hi
wanted to update this thread in case of use to anyone. Am expecting my baby on Friday!! Because of diagnosed underactive thyroid my midwife put me on shared care (mw & consultant led) which led to a few appointments at the hospital with various consultants at which point they did take note of my tsh scores and kept upping my dose (after I asked them to). I eventually saw the endocrinologist in April who put me up to 125mg (on which I've been since) and wrote a letter to the gp to say that my tsh should be kept between 1 and 2 and that under 4 is not good enough! And to be referred back to him after after having the baby and also if I get pg again. He admitted that gps have "no clue" when it comes to treating thyroid problems in pregnancy despite the gp being adamant than he had done this successfully for years. My tsh a couple of weeks back was down to 0.9 after being under 2 for some time. So I'm nearly at the end of the pregnancy now, I have to hope that the baby hasn't been affected in any way, fingers crossed but scans were all fine and pregnancy has been normal.
I have been astounded as how proactive I've had to be though at getting tested regularly and insisting on gettting thyroxin increased. Sure there are lots of hypothyroid women out there, diagnosed and not, who are not getting the right dose or care because they've not for whatever reason done their research and/or are not pushy enough with the docs.
Anyone else out there with underactive thyroid - you really do need to push to see a consultant and get your tsh down as soon as possible. GPs in my experience (I did see 3 different ones) useless!

LadyMedea Mon 29-Jul-13 13:54:57

If anyone is interested here is the NICE clinical knowledge summary - which should be uncontroversial with any GP - cks.nice.org.uk/hypothyroidism#!scenariorecommendation:7

Your GP should automatically refer you to a consultant obstetrician when you tell them you are pregnant. This is standard protocol for anyone with a thyroid disorder and I would think as you are newly diagnosed they'll probably want to see you sooner rather than later. I had my appointment last week and there was the obstetrician and endocrinologist both there.

On the dose front, wait until you get the results of your blood test next week. Then you can talk to your GP about optimum numbers and refer them to the above page. I wouldn't worry yourself too much in the meantime.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now