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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Hypothyroidism and TTC.

14 replies

Dormer182 · 31/07/2012 08:48

Hi all.
I'm just wondering if there is women i can talk to who have been in my postion before? I have had my thyroid gland removed due to a cystic goiter developing,making me hypothyroid,I now take thyroixine daily as i have no gland left to function.Recently my husband and i were talking about expanding our family.I'm wondering if there are real risks with a hypothyroid pregnancy? I have read some scary stuff on the internet today to do with stillbirth and birth defects and wondered if i should be considering risk factors? So I thought i'd ask real people before popping off to the doctors and wasting their time.
One more element in this story is my second child (male) has hypothyroidisn too,which is rare in male infants,which i was assured was down to just one of those things,a congenital birth defect,due to a fault during his development. It's due to an ectopic gland (in the wrong place) / abnormal gland (it's too small) and it's not functioning because of that. I was not hypothyroid/hyperthyroid during the pregnancy with him as far as i am aware,but i was not frequently checked as my levels had been normal even with my goiter (hyperthyroidism in the mother is known to cause hypothyroidism in the baby i was told) My problem was the cysts that grew in the goiter started to grow out of control and affected my swallowing/breathing, not the actual function of the gland at the time,that's why it was removed but as it stands now i will be hypothyroid while pregnant although my condition is well controlled. I have to take medication for good as my body cannot make any thyroxine at all by itself now.
Is there any hypothyroid pregnant ladies or mothers out there who have had more in the way of discussion with a medical practicioner than i have,who can offer me any advice?

OP posts:
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panicnotanymore · 31/07/2012 08:58

Your GP should refer you to an endocrinologist for constant monitoring throughout your pregnancy. Shout and make a fuss, as mine didn't. The only reason I got a referral was I read on MN that I needed one so challenged her. I am still waiting for someone to get back to me, so all I can say is if you can afford to go private do, as I have zero confidence in the 'care' I am getting.

FluffyJawsOfDoom · 31/07/2012 10:57

Your GP or MW will refer you to an endocrinologist when you get pregnant - first appointments are usually about 15 weeks. Insist your GP test you every 6-8 weeks before that, as uncontrolled hypothyroidism can cause miscarriage (usually only when it's very uncontrolled though!), and your GP may/may not know that the range is different when pregnant - it should be between .5 and 2.5 according to my endo - so ask that they check with the endo dept.

In a way, it should be easier having no thyroid than a badly-working one, as your levels will be very stable atm?

Dormer182 · 31/07/2012 12:59

Yes very stable, I had my thyroid removed five years ago and have been on the same med's since then,150mg daily of thyroxine,and my bloods have been normal since the tyroidectomy.Thank you both for the reply's it's nice to know there is others out there.I am starting to think maybe i shouldn't have any more children with the risk's involved (birth defects),feel really low about it today.

OP posts:
minipie · 31/07/2012 13:21

As I understand it, the risks are all related to women with unmedicated or undermedicated hypothyroid. Provided you are kept at the right level of medication (ie to bring you up to normal thyroid hormone levels), you should be no different or more at risk than someone with a normal thyroid.

However as others have said you will need to have regular blood tests throughout pregnancy especially in the first trimester. Even if your thyroid and thyroxine dose has been stable before pregnancy, it's very common for pregnancy to throw it off and for you to need more thyroxine. So you need to get tested asap after you get pregnant to check whether you need more.

Personally, I would suggest you ask for thyroid blood tests as soon as you find out you are pregnant (by which time you will already be at least 4 weeks pregnant). I would not wait until your first GP or midwife appointment as this may not be till quite a few weeks later. And definitely don't wait till seeing the endocrinologist as this can take ages! The longer you leave it, the more you risk being undermedicated during the early part of your pregnancy which is where the miscarriage and defects risk arises.

Some GPs will increase your dose a bit as soon as they know you are pregnant, without waiting for blood test results. The official NHS guidance says they should do this (this is because it is so common for women to need more thyroxine in early pregnancy, and because the risks from being overmedicated are much less than the risks from being undermedicated). However many GPs are reluctant to do this without first seeing blood test results and/or speaking to an endocrinologist. This is why I would advise you to press for blood tests asap.

By the way, the target range for thyroid hormones in pregnancy (especially early pregnancy) is stricter than the target range outside pregnancy. For example, outside pregnancy it's ok to have TSH in the range 1 to 5. However in early pregnancy it should be within 0.5 to 2. So again you may need extra thyroxine for this reason. Again not all GPs are aware of this difference Sad

minipie · 31/07/2012 13:22

Oh and best of luck with the TTCing Grin

CountryKitty · 31/07/2012 13:47

No personal experiance but my sister has hypothyroidism and has just had her third DC. She was monitored very closely while TTC and throughout her pg, with consultant led care, but experienced no serious problems and had a healthy DS. Goodluck.

FluffyJawsOfDoom · 31/07/2012 14:07

I really wouldn't worry about birth defects from your hypothyroidism, as you will keep an eye on your levels, they won't go wild! The risk really is minimal.

Fwiw I was on 150mcg for 3 years before I got pregnant with a stable TSH of 1.5, and I've actually gone marginally hyper since getting pregnant - it really isn't always a big problem :)

DoingItForMyself · 31/07/2012 14:27

I got Hashimoto's hypothyroidism after DS1 was born (immune response destroyed thyroid). I was told I was producing 'next to no thyroxine' myself, now take 100mcg a day, having started on 150mcg and wavered in between.

Got pregnant with DS2 and DD first try with each and had no problems with either pregnancy. Had several blood tests along the way to monitor, but if anything I felt more 'normal' and well during the mid part of pregnancy than I have done for years (almost tempted to have DC4 just for the few months of well-being! and those snuggly newborn weeks)

Good luck!

Dormer182 · 31/07/2012 17:50

Thank you everyone,feeling a bit more positive now :-D

OP posts:
Clarella · 31/07/2012 23:16

Hi second all of the above. The studies that show issues for baby are with very undertreated or subclinical (not treated) Hypothyroidism and in parts of the world where there is little or no iodine in the diet. We need a little more in pregnancy than usual, this is easily found in three good serving of dairy (fat free or full fat, makes no difference) each day.

I recently went to a British thyroid meeting run by a consultant obstetrician.who had special interest in this. She personally would like women to up their dose them selves (by 30 to 50%) on bpf. I found this an extra worry till docs got my bpf confirmed and agreed though erred on side of caution. I've had a strangely rocky ride (went quite under despite 2 early raises) but possibly due to being on a brand that was withdrawn (teva) in march/april. I've since gone over a bit since a panicked consultant wacked me up to 225 (tsh was 11, now 0.05, t4 20) but that is fine for a short while. Patients pregnant with thyroid tumours are completely suppressed.

She also recommended pregnacare which has the 3 main vital vits; folic acid, iodine and vit d. It's not the full dose of iodine needed as too much is not recommended but too much would actually be quite a lot of yoghurt!

Iodine is used to convert t4 (thyroxine) into t3 which the cells use. Baby needs t4 from mother. He makes his own around 26 weeks but continues to rely on mums till birth.

I've not had very consistent care (latest eg: last doc at hospital, an SHO or JHO, didn't have a clue about pregnancy ranges minipie has detailed and kept running off to her consultant) and a gp admitted they are having a problem with the labs. Frequently the docs request for t4 was ignored, you must make sure you have both t4 and tsh. I've learnt you must ask the nurse to write pregnant and how many weeks on the blood bag too. Find out results too, it can help to keep track. I must admit I've booked blood tests roughly each 3 weeks following the crazyness, and my gp actually thought the hospital said each 2 weeks.

Personally next time I will up it myself.3 different gps gave diff advice pre preg and then in early preg and I've been to hell and back with the stress of it all.(also due to actual effects of fluctuating thyroid plus slapped cheek issues but that's another story!) I now know everything will be ok but had to do a lot of finding out till finally saw consultant at 13 weeks. The British thyroid foundation are excellent and supported by the British thyroid association, the UK's expert endos. There are bits of info in their newsletters. Midwives don't know anything though apparently the top endo here did send out a fact sheet to them all.

Need to emphasise mine has reacted strangely and if you don't have a thyroid it should be easier to control but you actually have a right to be referred to an endocrinologist or obstetrician now to check.all these things (as 2 consultants have emphasised now).

All the best! Xx

FluffyJawsOfDoom · 01/08/2012 09:16

Clarella, I found the same regarding labs - if you don't write "pregnant" on the form they will pick and choose what to actually test, regardless of what the GP has requested. Madness.

Clarella · 01/08/2012 10:11

I think you told me to do that fluffy as found the same :) ! Both btf consultant and my gp ( who is a teaching prof at the uni) said labs could be a law unto them selves. Also, a nurse said she felt the forms were badly designed and also different to the hospital ones.

FluffyJawsOfDoom · 01/08/2012 11:27

Yes our GP ones are different to our hospital ones too....... I'm starting to wonder if we're in the same PCT :o :o

Clarella · 03/08/2012 19:10

Lol maybe! 'up north' ;)

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