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!

Wow amazing midwife at hospital - understood my concern and recommended speaking to the gp about my concerns and getting antibody test now. She said a relative has graves and has all sorts of ongoing issues despite being treated and the thyroid is a 'funny little thing.'

Found an exceptionally good nhs guideline from Scotland which seems pretty comprehensive (though my t3 is never done!) But the tsh seems to be very low in first trimester if that helps previous questions. - though not in the second trimester which worries me again! I don't know if this link will work and only on a touch phone.

www.google.co.uk/url?sa=t&source=web&cd=1&ved=0CFQQFjAA&url=http%3A%2F%2Fwww.nhslothian.scot.nhs.uk%2FServices%2FA-Z%2FDiabetesService%2FInformationHealthProfessionals%2FMUHEndocrineManagementProtocols%2F007b_Thyroid%2520Function%2520Testing%2520in%2520Primary%2520Care%2520Pregnancy%2520Guidance%252017.10.08.pdf&ei=zSnkT4joBsTs8QPEhrTcCg&usg=AFQjCNFnWFLy5p7-GVcnydGWT_w_zirsOA

The link above downloads instantly so only do if you want to download.

This info worries me. I am 30 weeks with DC3. I was diagnosed after DC2. Ive always felt awful, my levels were all over the place for 2 years and ive felt very wiped for last 4 weeks in particular. My doctor is worse than useless.

They only checked me every trimester and it was only when I was finally sent to a consultant last week that they found im severely anemic and the level you were talking about leoniedelt was 14. TSH was fine but I hear what you are saying about it being unreliable.

So if I have spent my PG with such a low level then going by what I have read I can expect a baby with low IQ, possible birth defects or thyroidism from birth . Not to mention the non starting birth which ive had 2 of already.

Im really worried now .

Oh dear quickchat, please don't worry. What is your tsh? I believe it generally is a good indication as although it can waiver a bit it shows the general average levels if t4 - which can vary - that the pituitary gland is responding to. Your t4 is in the middle range. Mine was 16 when the tsh was 11. I believe, though very worried at the time, that there was enough t4 for baby but not for me, which may be your case. I would talk to the consultant if possible again about your worries - mine were certainly more concerned about the tsh which messes with the baby's system. Affected iq is extremely minimal mostly in women who are subclinical - not being treated with any thyroxine and not known about. This is why they are considering whether its worth screening all pregnant women.

Re antibodies test: I rang the docs who had the letter saying it had been done, but hadn't so she rang the hospital back (why the midwife didn't just knock on the consultants door I don't know!) and consultant said its not an issue till 23 weeks if atall and he'd want it done before then - should have been done at scan as he requested but that's why it wasn't an issue at the hospital. Not sure if had to be done again or not but I had it done today, didn't have to though. I think it was originally more to check why the tsh had gone so high. No idea if this helps anyone but I feel that hearing other experiences helps!

Tugs you should be referred as standard now you're pregnant, make sure you ask the MW - and thanks for the reassurance! :)

Clarella make sure they put on your blood form that you're pregnant - in my trust, the blood lab can choose not to run antibodies or fT4 if your TSH looks fine, but if you state you're pregnant they will make sure to do it.

Quickchat the baby should have its own functioning thyroid by 12ish weeks, so there will be no harm to it from high TSH levels now; however, having a high TSH in Tri3 apparently can affect your milk production post birth, so you still need to tackle it. Good luck :)

Hi fluffy, that is exactly what I've discovered and now realise. I will be breathing down nurses neck in future! I always get a computer results print out also.

On the antibody test (which I think is more of an issue in graves etc?) - the reason 2 nurses had failed to do it at 12 wk scan and last Monday (under the consultants watch) was because its not on the printed blood bag sheet - it has to be printed off on a sticker from another online thing. Even the gp practice nurse has to call the lab to work out how to do it.

I know now its not an issue but never know what is or not!

My sister has this and her doctor didn't look after her properly (change her medication) and she miscarried :(

But after that the hospital took over her care, and 3 weeks ago, she gave birth to a healthy baby girl :)

Thanks fluffy. Had my booking in yesterday and MW referred me to an obstetric consultant who I'm seeing 2 days after scan in a couple of weeks so feeling a bit better about it.

Having said that I've woken up with v mild cramps and brown discharge but trying not to panic...

Hope you're ok tugs ?

Yes thank you, sorry to leave such an ominous post there! After the longest weekend of my life went to the EPU this morning and had an internal scan and all is ok :) No explanation for it but mw just said "it happens". Phew!

Ah that's good :)

Hi all
So I had my repeat test results back, and I'm now hypo again (just). The MW ones said TSH was 4.2, which is the high end of normal, and TFT was 14.2. The GP ordered ones 6 days later were TSH 7.3 and TFT 15. Can they really change that quickly so fast?? I guess they can. Anyway GP has put me up to 200mcg from 175 (pre-preg I was on 275) and will retest in 6 weeks again. Am seeing obstetric consultant next week after my scan so will see what he/she has to say as well. Hoping that having reduced my dose so much so early in pregnancy isn't going to do any harm to my little one but no point worrying about it I suppose.

Tugs your TSH can be quite changeable depending on time of day etc I think so it could just be natural fluxuations?

however my endo & obs consultant told me they use a tighter range during pregnancy - TSH should be 0.5-2.5. It'd be worth checking this with yours when you see him/her. Hth.

Btw ladies I've also just discovered that gaviscon stops the absorption of thyroxine so be careful not to take it too close together!

Hi tugs,

Yes my tsh changed from 11 to 9 in 3 days but the first was done first thing in the morn, the second was in the afternoon at the hospital and I think I may have read somewhere it changes by about 3 points over the day (highest am) but could be wrong so don't quote me!

How many weeks,are you again? Mine flew up at around 10 weeks and I've wondered if it was due to an extra surge of estrogen around then which can interfere with things.

Thanks fluffy, i'd wondered about gaviscon due to calcuim in it, luckily tended to need later on! And second what you say about ranges in pregnancy.

I'm going to the local British thyroid foundation meeting on pregnancy next sat ( I think the date is wrong in the website as today!) So making a list of qs! There's a consultant there from hartlepool.

Some i'd thought of were - does tsh change during day, does estrogen inhibit the hormones (eg in the pill as well as preg as I became hypo when started pill), and would my body have made sure all the thyroxine had gone to the baby when I was getting low!

Also - why is it so hard to get the labs to do t4 even when it says pregnant and is requested (my doctor told me they are currently a law unto themselves) and what are the trimester specific ranges?
And - would stress exacerbate/affect it as I was really stressed by slapped cheek outbreak at school and finding out I wasn't immune around the time my thyroid went cuckoo!

Any other questions?!

I will post my full story when I can, but briefly I had a miscarriage last week at 10 weeks, despite battling with GP for tests I never had any. I have just got back from Doctors after requesting a thyroxine test at EPU during miscarriage and my TSH levels are 41.

This is a great thread and I so hope that anyone with hypothyroid gets the tests you need, please don't stop battling, I wish I had fought harder.

Oh Diana, that is soooo sad, I am so sorry and extremely shocked for you. What utter, utter negligence - a simple bloody blood test and having the nouce to simply check the guidelines, or even just call the hospital. I am so sad and cross for you. Huge hugs xx

Diana I'm so, so sorry to hear that, and absolutely furious on your behalf. It's outrageous that you didn't have a test sooner. Hope you're doing ok, sending you lots of hugs xxx

Clarella it's fantastic you're going to the BTF meeting and thanks for asking those q's. I'd be very interested in the oestrogen links as well. All the many, many years I was on the pill my thyroxine dosage just went up and up, and then when I came off the pill it went hyper/loopyloo.

The management of thyroid problems in pregnancy seems to be so random and very much dependent on where you live, could you pls ask them if there is any kind of national protocol on how it should be managed and if not, why not? Diana's experience is a tragic example of woeful understanding of some doctors of the importance of healthy thyroid function in pregnancy and it has to be sorted out.

I'm seeing the obstetric consultant this arvo who I'm hoping will have a clue about thyroid and if not will ask to see an endo consultant. Will ask him/her about trimester-specific ranges as well.

I am still cross about your experiences Diana.

As far as I am aware the protocol is on the NHS website: www.cks.nhs.uk/hypothyroidism#481050006 which doctors should be following and came about following review of recent research, all of which is listed on this page. Its simply a lack of knowledge. I only heard about it via radio 4.

The BTF funded recent research into this area (a small local study in Leicestershire) and found "65% of the seventy GPs who replied had no knowledge of any guidelines. Only a small percentage was aware of the target values for TFTs during pregnancy and when thyroxine doses should be changed. Nearly half said they would leave monitoring and changes of thyroxine dose to the Endocrine Antenatal clinic ? a worry given the late referral to this service." (ie after 12 weeks and past the crucial time) The BTF are the charity directly linked to the british thyroid association, which all the main top uk consultants are apart of.

imo thyroid problems are a bit like diabetes in very slow motion. consequently the panic to manage is less urgent but i feel as equally important to the overall health of the patient. as we can struggle on (and many do) its simply not seen as such a fuss. It also makes you rather hypochondriachic which i hate, but you just have to keep trying to work out what's wrong, and in this case, the lack of knowledge is frustrating. I also can't help wondering if there's a difference in the fact that its mostly women suffering (and generally just get on an suffer) and fewer men experiencing these issues. (dont like thinking like that but it's hard not to!)

that reminds me i actually need to join the BTF properly!

Diana please lodge a complaint against your GP - this is the only way your GP's procedure will be changed and the importance of thyroid testing can be better understood imvho.

I agree Fluffy.

BTF research: www.btf-thyroid.org/index.php?option=com_content&view=article&id=189&Itemid=256

Diana I'm very sorry to hear your sad news. A similar thing happened to me with my first pregnancy. I had not long been disagnosed with Hasimotos disease (but had obviously had it for a long time) and so had not got a handle on my levels, nor really knew anything about thyroid problems. When I found out I was pregnant I went to the GP who said he didn't need to do anything about my thyroid "It will all be sorted out much later in pregnancy". I insisted on having a blood test, which he wasn't happy with, but agreed to. My TSH levels were too high (but I didn't know that then - and I foolishly thought he would know best). He agreed to increased my thyroxine dose but only marginally which clearly wasn't enough. I had a missed miscarriage at 10 weeks and, although it could have been for any number of reasons, am sure it was linked to my thyroid. Unfortunately, like you, I have had to learn the hard way and have now taken matters into my own hands. Am now 19 weeks pregnant and basically told the GP what I wanted him to put my thyroxine levels up to and have been marching in there once a month to insist on blood tests to check my levels independently. He, incidentally, still doesn't seem to have a clue, but I have ben so insistent he has just agreed! Despite the consultant saying, when i had my mmc, that my levels would need to be monitored by an endo this time around I have not heard anything about an endo appointment despite asking everyone when I will hear. It always seems to be someobody elses job. I am, shocked how little care is taken in the first 12 weeks of pregnancy when clearly this is the crucial time. There seems to be an attitude of not spending any resource in early pregnancy and it is pure luck if you can get to 12 weeks safely. I think a lot of miscarriages would probably be avoided for the sake of some inexpensive testing and monitoring at an early stage. I have an appointement with my consultant next week and hope to get a referral to the endo then, but really still feel it is too little too late. I have the ability to do my own research and try and monitor the sitaution myself, but many women do not and it is a tragedy that these women are being failed on such a simple issue. I wish you lots of luck for the future.

I meant Hashimotos of course.

Rain I'm so sorry to read about your previous mmc. Well done you for being so insistent on getting the proper tests this time round. Your GP sounds utterly useless. Keep pushing for the endo appt.

It seems insane that we don't get referred to the antenatal endo/thryoid clinic until second trimester when it's the first that's so crucial. Makes me so mad!

Thanks for those links clarella - v interesting reading. I'm feeling quite worried about my GP having reduced my dosage so drastically in the first trimester, even if I was officially "hyper", given that the recommendation is to increase thyroxine by 30-50% during pregnancy. Hope to god it didn't do my baby any harm. Will quiz the consultant this arvo and report back.