levothyroxine question

[Alicefff]

Hi ladies,

I wonder if anyone could give me any advice regarding under active thyroid/levothyroxine.

Before I started my IVF cycle they tested my thyroid and said I have a slight under active thyroid and put me on 25mg of levothyroxine. They tested me every 4 weeks during my cycle (from Jan- April) and increased me to 50mgs.

I’m so pleased to be 14 weeks pregnanct- I have been discharged from my clinic, they advised I keep up with the thyroid blood tests through my midwife. I spoke to my midwife and she said I should see the GP about it. I made an appointment with the GP and explained the situation and he said the clinic had contacted him re pregnancy but hadn’t mentioned levothyroxine. He advised I make an appointment for a blood test. I went for my bloods last week and finally got my results today. The receptionist said you thyroid test was normal and a note saying no further action. I tried to explain yes it's normal but that's cos I'm on meds if I stop it probably won’t be. she said there is no record of the meds on our system so I had to go through the whole thing with her and then she said she would message the doctor and to call in a week. I said I have 4 tablets left (the whole process from seeing my midwife has taken 3 weeks) and if I stop could be bad for the pregnancy. She moaned and groaned and said call in a few days.

Am I saying the right thing I shouldn’t suddenly stop because my thyroid test is normal? The whole process has been so confusing when it comes to the drugs.

Thanks in advance xxx

[Orla9298]

You 100% shouldn’t stop the levo. In fact it is standard practice that once pregnant you increase by 25mg immediately and monitor every 4 weeks. However you can be reassured that your levels are ok at the moment but it is essential that you stay on the dose and keep monitored regularly so you need to push it with your GP urgently. Maybe your clinic can fax your GP? Either way it’s pretty important. Good luck! X

[Alicefff in reply to Orla9298]

Thanks so much, that’s what I thought. Yknow when you have a conversation like that and then start to doubt yourself.... I will try and contact the clinic for advice but although I can’t fault the treatment I received they literally never reply to phone calls or email queries and are based a long way from where I live.

Thanks again! X

[Clare_lou in reply to Alicefff]

Hi Alice, It sounds like you’ve had a similar experience to me. I ended up in tears at the gp last week as he said it was all normal and no further action required, and just couldn’t seem to understand why I needed repeat blood tests, and/or to increase my dosage. Anyway, In the end he said if my clinic write him a letter explaining everything, he’ll do what they tell him to!!

So, yes if you can get your clinic to email/fax the gp hopefully they’ll sort you out asap! X

[Alicefff in reply to Clare_lou]

Sorry to hear you went through this. It is so stressful when you can’t get the meds you know you need. I had it early on in my pregnancy when the clinic said my progesterone was low and I needed to get cyclogest but every pharmacy was closed or out due to the snow (I live in the countryside). I was crying in the middle of Asda when they told us they had them and we turned up and they closed early due to snow. I’m glad you got it sorted. Thanks so much for the advice!!! Xxx

[Clare_lou in reply to Alicefff]

Thank you. I’m actually still waiting for the clinic to send the letter...hopefully in time for another test within the four weeks!

Oh gosh, your frantic search for meds through the snow sounds like a nightmare...as if this journey wasn’t stressful enough!

It’s so hard when sometimes it feels like you know so much more than the gp but they just don’t take any notice of you! I think they probably think I’m a right pain in the a**!

You’re most welcome. I hope you get it sorted! Xxx

[Orla9298 in reply to Alicefff]

If you end up really stuck I can post you a few days worth of mine xx

[lucylob]

Totally agree with the below! You definitely shouldn’t stop ! Your levels are normal as you are on medication. I’d call and ask for a call back off the dr to get a prescription ASAP ‘good luck to you xxx

[Alicefff]

Thanks so much I am currently writing an email/leaving message for clinic and will call back GP surgery and force the matter with them.

[Hidden]

Don’t stop the thyroxine as the level is normal due to the medication. You can get an emergency 7day supply from a pharmacy to help tide you over. If the diagnosis was made at the clinic they need to write to your GP to handover care. Good luck! X

[Alicefff in reply to Hidden]

Thanks for the advice. My clinic did a handover letter but apparently it says nothing about it...! X

[Ninirk]

Hi Alicefff,

Congratulations on your pregnancy. I have to say that your IVF clinic has really been good at monitoring your thyroid levels because most of the clinics do not bother about it (mine wasn't). In fact they've even followed the guidelines and increased your dosage once your pregnancy was confirmed.

I have a slightly underactive thyroid (diagnosed with subclinical hypothyroidism) and take levothyroxine everyday.

Your concern is very right and you should not stop your levothyroxine now. In fact there are trimester specific ranges of tsh which has to be strictly followed during pregnancy. Your tsh & ft4 has to be monitored throughout your pregnancy with blood test carried out every 4weeks until 16-20weeks gestation and atleast once between 26 and 32weeks gestation in order to make sure they are within the trimester specific range. I would recommend you to go back to your GP and demand him/her to prescribe you the medicine and make sure your levels are specific to your trimester (now that you're in second trimester your tsh should be <3.0mU/L). If you want I can pm you the links of some articles and maybe you can take a print out of them and show it to your GP (ask your gp to consult an endocrinologist for his/her satisfaction if need be).

I hope you get this resolved soon. All the best.

[Alicefff in reply to Ninirk]

Thank you for your reply. It is frustrating that I have to chase a gp who should understand all this but I will do anything to keep my pregnancy safe. Thanks I’d love the documents x

[Ninirk in reply to Alicefff]

I'm sorry that it is frustrating for you but hopefully we will all learn the tactics of dealing with the consultant/GP in convincing for what we want by the end of this journey. I have sent you the documents via pm. Good luck.

[Maikai in reply to Ninirk]

Can you pm me these links please

[Alicefff in reply to Maikai]

Do you still need these? I can forward on?

[Clare_lou in reply to Ninirk]

Could you please pm me these links too? X

[Alicefff in reply to Clare_lou]

Do you still need these? I can forward on?

[Clare_lou in reply to Alicefff]

I have them, thank you! X

[Jhenderson]

You should not stop taking your meds. You have a normal blood work because you are on the correct dose. Stopping will mean you’ll be under active again. It won’t matter if you run out of meds for a day as you can make it up over the next few days and the meds have a two week half life in your system.

Just tell your doc you need a prescription for what ever dose you are on. Explain you have have normal blood work as you’re currently on 50 at the moment. Schedule another blood test for 4-6 weeks time and continue that for the remainder of your pregnancy and after. You might find you need to increase your post partum.

Just be confident and persistent Congratulations! Xx

[Alicefff in reply to Jhenderson]

Thanks for the info I will feel a lot more confident speaking up now. Going to chase again tomorrow. I’m quite a shy non confrontational person I am already learning that been a mum means being a lot more ballsy then I am used to. I think this whole process has made me realise I’m stronger than I thought! I knew I was right so I wish I had pushed in the first place. Thanks again for talking the time to reply. It’s good to know there are people that care x

[Olivia80]

Hi, I have no thyroid and am in the middle of first IVF cycle so understand your frustrations. Can you speak to your midwife/clinic who diagnosed the under active thyroid and get them to write to your GP ASAP setting out your current medication, and also get a prescription from them for more pills whilst you’re sorting the GP?

[Beaki]

Hi alicefff

You are def right in not stopping. It reaches normal level when your meds are just right for you. I have been taking Levo for over a year after my level was at 2.7 at begining of treatmen for ivf. Had a cycle of ivf last year which failed but then got pregnant naturally the month after! I had flu at christmas and doc just tested my thyroid on the off and it came back as 10.4!! It should be 2.5 or below for pregnancy. Even though I was on 50 mcg!! Anyways,I was referred to endo urgently at hospital who put my dose up to 75 mcg and ever since I have been in normal range. My level is currently 0.89 and I'm still being advised to take Levo at 75mcg and have 11 weeks to go with my pregnancy. I can only stop when I have had my baby and then have to test again in 6 weeks to see if it stays in the normal range. My midwife has never advised me of my medication for thyroid it has always been gp or hospital consultant. Perhaps you should make an appointment with a different doctor if you can they may suggest different? Hope this helps a little x

[Alicefff in reply to Beaki]

Thanks for your reply. I’ve managed to speak to my GP and it’s sorted - they will test me every 4 weeks and prescribe what I need. From your experience it sounds like levels can flutuate a lot depending all kinds of factors so it comforting to know they will keep an eye on me now and for the rest of my pregnancy. Good luck with your last 11 weeks I bet you cannot wait to meet your little one now. Thanks again for being so kind and replying, everyone’s responses have made me feel a lot more confident at managing my thyroid and I won’t be afraid to stand up for myself now I know I have the right information. Xxx

[AnnieAnnie]

Congratulations! I was in a similar position but not pregnant. I called my surgery for my results for testing TSH and was given them by an admin clerk. Rather than telling me what the reading was, she told me that everything was normal. I specifically requested from her the reading. It was 2.8 and therefore above the recommended 2.5 for trying to conceive, I told her that it may be normal but not for me as I'm trying to conceive and that I would need to make an appt with the GP yo increase my meds. So be careful when receiving results especially if you know what the levels are supposed to be. Good luck and definitely push for the medication xx

[Alicefff in reply to AnnieAnnie]

Thats good to know. It’s such a mine field at times. All the best with your journey and thank you for taking the time to message me it’s very kind of you x

[Alicefff]

I just wanted to thank everyone for their responses and for sharing their experiences. This seems like a common issue and I have raised with my clinic the fact that it would have been helpful to have had some kind of handover either sent to me or instructions I could have shown. Also, I managed to speak to my GP and it is all sorted now and I now have a shiney new packet of levo. I have to book myself in for monthly bloods and they will continue to pescribe. Massive weight of my mind and I can continue to try and enjoy the pregnancy stress free. Thanks again and all the best of luck to everyone else xx

[AnnieAnnie in reply to Alicefff]

Glad you got it all sorted! Monthly blood tests will help put your mind at ease. Good luck and enjoy your pregnancy xx