TTC without a thyroid?

[Picklesandpies]

Hi,

Dh and I are planning to TTC baby number 3 soon. I'm 33 and I had my thyroid removed 3 years ago due to hyperthyroidism. Dd1 and Dd2 were had before this problem. We had been planning to try for another baby when I got diagnosed so it put those plans on hold.

I've had a few other problems since then (mainly widespread muscle twitching that had me convinced I had something awful - two years on I still have it but neurologist said I'm fine and I think it would have manifested itself by now.)

I had a blood test recently and my TSH is 4.28, T4 is 14.6 and T3 4.5. Whilst they are normal the TSH is too high to TTC as it should be below 2.5. I'm very sensitive to increase in thyroxine dose (they think that may have started the twitching as after dose increase T4 doubled in just six weeks from 11-21.) My endo did say he may be able to give me T3 to bring down TSH but that you can get worse palpitations - which I still get.

Can anyone share their experiences with me - I feel quite alone with this as it doesn't seem to be a very common problem! I don't want to leave TTC much longer as it's ten years since we had our first dd.

I'd be so grateful if anyone can shed light on what it's like having a baby with no thyroid - was it hard to conceive? Were you consultant led during pregnancy? Were they are problems with you or the baby afterwards?

Thank you.

When I was pregnant with DC2 my Thyroid gland packed up. I do still have thyroid but it does not work at all. I have to take thyroxine supplements and even though I have been told repeatedly I am within normal bands I have never since had the energy I had before. I also find it hard not to put on wight whereas I never found it hard before my Thyroid packed up. We wanted another child and it took 4 years to get pregnant whereas my first 2 pregnancies took a couple of months each. I lost DC3 at 16 weeks and consultant could not find reason why. I did not manage to get pregnant again even though we tried for several years and then I thought I felt too much time had passed because DC2 was 8 years old. So we stopped trying to conceive. My doctor always says there is no reason I should feel more tired less active etc. but the fact is I do and it started when Thyroid packed up.

Thanks for the reply. Sorry to hear you have had a rough time of it. I can completely relate to energy zapping! I was found to be anaemic so iron has helped a little with that.

I'm just really broody now and would love another child - just so frustrating having this to deal with as well.

I'm not a doctor so this may be wrong, but: are you sure that after thyroid removal the reference range for TSH is the same? If you don't have a thyroid gland, might the body be 'confused' and trying to stimulate it into action even if your thyroid hormone levels are actually OK?

The idea that it ought to be under 2.5 stems from the belief that if it's over 2.5 your body is having to tell the thyroid gland to work harder, and you have subclinical hypothyroidism (even if T3 and T4 in normal range). Personally I am dubious about this anyway, because I have conceived very quickly both times and had normal pregnancies, and my TSH is never below 2.5. (Used to be on thyroxine in US, taken off it on moving back here. My T3 and T4 have always been normal. My TSH is usually 3-4.) There must be lots of other pregnant women with TSH levels of 3-5 because GPs don't treat this as abnormal. (This isn't to say that some women with fertility problems wouldn't benefit from thyroid treatment, only that a lot of women with apparently sub-optimal thyroid function are perfectly fertile.)

Obviously you need to discuss this with your doctors, but I can't see why you shouldn't hope to start TTCing now!

Thanks Hopsalong. I have to admit, I find it all very confusing. I had a better grasp of things when I was hyperthyroid but since I had it removed I feel as though I've just been left to crack on with things (despite having been very poorly two years ago with increased dose.)

I'll raise those points with my endo if I see him again. I do understand why you would question the ranges being the same if you don't have a thyroid. My endo said you have an increased risk of miscarriage and 'baby goitre' if it's over 2.5. But it's encouraging to hear you had two healthy pregnancies despite this.

Did you not have any increase in thyroxine dose when you were pregnant then?

Hi pickles

I have 3 children my last two were conceived after I had a complete thyroidectomy in 2008, the middle actually was 6months after the op! My youngest who is 2 was an accident but a very happy one. I have been on a high dose of thyroxine since the op (250mcg) and it didn't change throughout either pregnancy.. I felt fine and was monitored closely by both my endocrinologist and the midwife team and both myself and my children were fine, the only thing I had to do was stay in for 48hrs after the birth for the babies to be monitored but again both were fine. Of course you need to discuss with your doc but it shouldn't stop you from ttc now if that is what you want to do!

Hi Ron,

Thank you so much for your helpful and encouraging reply. That gives me some hope

Do you know what your TSH was before or during pregnancy?

I am only on 125mg of thyroxine now - I'm amazed to hear you are on double that! I weigh 9 stone . I find I get tired but I'd rather that than have a bad reaction again. I seem very sensitive. My thyroidectomy was after carbimazole crashed my immune system and I had to go into isolation and get control of pneumonia that my body was unable to fight. It was quite scary. I'm a bit anxious about what effect a dose increase would have on me but I'm guessing that the baby is taking much of that increase, rather than me?

That's interesting that they monitored your babies for 48 hours. Reassuring. Did they test you soon after the birth also?

Apologies for the questions but it's so nice to hear from other people who have been there x

When I was in the US (with a TSH of 3.5/4) I was on levothyroxine, but when I moved back to the UK my GP didn't want to carry on prescribing it. My TSH went back to 3.5/4 (had been about 1 when medicated) but honestly felt no different (had never really had symptoms in first place, only bad circulation).

So I wasn't on any medication when pregnant. I asked for my TSH to be tested in first trimester of first pregnancy and was a bit anxious when it came back as 3.5, but GP said it was fine/normal...

Good luck!

Thanks Hopsalong. That's really interesting. It seems some GPs/Endos are militaristic about it being less than 2.5 and others don't care about it so much. My endo has said all along that it needs to be less than 2.5 (or even 2?) but last time I saw him he said it wouldn't matter if I got pregnant, he would just adjust my thyroxine dose. I've asked for clarification on this as it seems a bit odd to just change his mind completely. I'd obviously like to whatever is safest for myself and the baby.

Thanks so much for sharing your experience with me.

Hi pickles

I can't remember what my levels were now sorry but I know I was seen every 6 weeks by my endo and I had scans every 4 weeks throughout my pregnancy due to my condition, I was very well looked after and never once felt anxious due to my problems or medication. I suffered many infections before I was told I needed surgery as I was becoming really quite poorly and I was only 25 at the time so was pretty scared! I have always been on a very high dose as when they have tried to reduce me I become ill very quickly so over the years we have learnt that my dose needs to remain at 250.. yes the baby will take most of the thyroxine from you if your dose was upped, they check the babies weight throughout too as a higher dose can lead to larger babies.
Yes both babies had checks every 4 hours in hospital and then blood tests at 48 hours, 7 days and then 14 days. I had a blood test after 48hrs too and then another after 4 weeks then again at 8 weeks and the last after 6 months then I was back to my normal once a year blood tests, I know I am very lucky as I was perfectly healthy through out and I was so well looked after.. I hope you find the same when you find yourself pregnant again

Thank you so much for your helpful reply. It certainly sounds as though you received excellent care during your pregnancies. I hope I have that if I am lucky enough to fall pregnant. Always a bit of a gamble depending on where you live! I still see an endo consultant who is three hours away (we moved but I kept seeing him.)

Glad you are feeling well anyway - thanks for the positive post. x

Hi OP,

I was born without a thyroid and conceived DS very quickly, TSH was about 0.6 but cannot remember what my other levels were. I was on 150mg a day and as soon as I found out I was pregnant my dose was upped by 25mg a day.

I was consultant led throughout all of pregnancy with scans every 4 weeks from 12 weeks. Pregnancy was straight forward and after the birth my thyroxine was reduced to normal levels and a blood test 6 weeks later to confirm levels were normal. DS is also completely healthy thankfully!

Currently trying to conceive DC2 and conceived in Jan pretty quickly again, unfortunately this ended in mc, my GP referred me to an endo which I have been seeing every 3months to have my levels checked as unfortunately if levels are too high you have an increased chance of mc. Endo told me that TSH needs to be under 2.0 to avoid the increased risk.

Definitely talk to your endo about your levels especially if your TSH is high and you're feeling tired. Are you having any other symptoms like dry skin/hair or muscle aches?

Hi Emz01.

Thanks very much for your reply. I'm interested to hear about how you had scans every four weeks - were they concerned the baby might be big or small? PP said with high dose of thyroxine that chances of a big baby are higher but 150mg doesn't seem like a big dose.

Can I ask whether you felt any difference taking the higher dose? I'm so worried about ending up hyper again (or having symptoms mimicking this.) Last time I had a dose increase I thought I was going to die (sounds dramatic but I'm being honest!) My legs were like jelly, running to the loo all the time, heart palpitations etc

Sorry to hear about your mc. It is obviously not going to make that any better but I suppose there is some comfort in that you can get pregnant and fairly easily. I hope you get a bfp again soon and the endo looks after you well.

I do have dry hair and I do have muscles aches and twinges, yes. That's as well as all over muscle twitching which is so frustrating as it makes me worried (I never hear of anyone else with thyroid issues having thyroid problem!)

Did you have palpitations before you conceived and if so, how were they in pregnancy?

Thanks ever so for sharing your experience! x

Meant to say 'this' problem not thyroid problem!

I still have my thyroid, but I've had hypothyroidism for the past decade. I'm 30 now and when me and my husband started trying recently, I was convinced I would have loads of issues and it would take months to conceive, but no. I became pregnant the first month of trying (I was in shock when I saw my bfp). As long as you are on the right dose, there's no reason why you shouldn't be able to conceive. You will just have to have regular blood tests when pregnant to make sure your dose is adjusted correctly. Good luck!

Thanks Beccasauras! Congratulations on your pregnancy! Can I just ask whether you feel any difference having your dose increased?

And did you have the magical TSH of

@Picklesandpies absolutely no problem at all, I know how frustrating it is to get answers sometimes as not having a thyroid isn't all that common.

My endo didn't go into if they were worried that baby was going to be big or small just that they were growth scans.

I definitely feel better taking the higher dose, i've experienced symptoms of both hypothyroidism and hyperthyroidism (when on different doses) and it was horrible. So I can relate to why you don't want to mess with you dose too much. I think it's definitely worth mentioning your symptoms to your endo. I would also ask for a blood test every 3 months if they change your dose so they can keep an eye on it especially if you're TTC.

Only ever experienced palpitations when my thyroxine was too high which wasn't before pregnancy.

Good luck! Hope everything goes well for you and always feel free to message me if you want to talk.

Hey ladies. I was diagnosed with hyperthyroidism in October but my referral for a specialist was delayed and I needed up falling pregnant in the December. I was rushed through to a specialist and they finally saw me in January when I started on 50mg of propylthiouracil twice a day. It's safe to take during the first trimester.

Sadly I had a mmc at 10 weeks in February as the baby had growth issues and I believe it was a direct result of my thyroid issues.

Roll on 4 months after MMC and I got the all clear to TTC again, my levels were normal and ideal again. My specialist has been AMAZING. He's been very realistic and informed me about pregnancy and my thyroid. He wants to see me every 2 months and have regular scans to make sure that both my and any future pregnancies are progressing normally. And while I am absolutely craping myself that it might happen again, I'm so very grateful to be educated about how my thyroid can effect a pregnancy.

My advice would be to make sure your levels are within the normal range before TTC to not only give you the peace of mind but to also maximise your chances of a successful pregnancy.

Good luck everyone. X

Morning Emz01,

Thank you again for your reply. It's nice to hear you feel well on a higher dose and you weren't troubled with palpitations. I still have them but no one ever seems terribly concerned. I'm told it's just because my heart was bathing in thyroxine for so long. How comforting!

I'm just about to try liquid thyroxine so we will see how that goes!

You are right about how having no thyroid can feel a bit isolating - it's so nice to hear from people in the same boat! Really appreciate your reply. I'll get in touch if I think of anything else

x

Morning Mouselove,

Thanks for your reply. Big congratulations to you too! What lovely news for you after your mmc.

Being hyperthyroid is not fun at all... I have never felt so ill. Did you and do you get palpitations? I was never given the option to TTC when I was being treated for hyperthyroidism. My levels were off the scale though so maybe that's why.

I am waiting to hear back from my endo today about next steps. I'm going to go for an EMG to check the muscles twitches aren't anything serious before we TTC. I'm praying that it's clear. Then I need to get my TSH down. Very scared to take more thyroxine though in case it sends me hyper like last time. Endo did suggest it can be done with T3 but it can worsen heart palpitations so it's a bit...

It's really nice to hear from other people with similar experiences - would be nice to keep in touch occasionally if that's possible (I don't know how this works if threads get deleted after a certain time?)

Hope you continue to have a happy and healthy pregnancy x

Gosh Mouselove, I'm so sorry but I think I misread your message and perhaps you are not pregnant again? I'm so sorry if I got that wrong. X

Oh pickles not yet!! But hopefully soon if I'm lucky. I'm just very grateful for being able to TTC again. It's been almost a year now.

I have and had absolutely no real symptoms of being hyper apart from a slight hand shake my specialist picked up on just after my mmc (like 3 days after so I was still a mess)

My thyroid issue was picked up doing a full blood work as I have issues with pain in my joints and pelvis. My doc seems to think that sorting the thyroid might help my joint pain.

If anything I would say I present symptoms of being hypo as I'm not slim and I have low energy. But nope, I'm hyper. Wouldn't have even minded the rapid weight loss 😂

Good luck in your journey. I think you're very wise to get your health in tip top shape. Xxx