Thyroid Issues

[RollingInTheAisles]

I'm struggling a bit with trying to get the right answers / care for hypothyroidism during my pregnancy and wondering if anyone has any advice. My doctor thinks just checking my levels every 8 weeks or so would be fine.

From what I've learned online (dangerous I know!) it's often recommended to raise the thyroxine dose preemptively at first knowledge of being pregnant. He didn't want to do this. I'm now 10 weeks and have had two blood tests 5 weeks apart (at my insistence) and the results are below. He's saying this is fine. I think that if I wasn't pregnant and if you looked at the most recent results in isolation you'd probably say they were fine.

However I'm worried because I can see they're changing and am worried I'll have to wait until they get quite bad before anything is done and by then it might have caused problems. I don't see my consultant until 22 weeks (haven't seen her yet) and my midwife is on holiday with no back up. I don't know if I should just let this go or am right to be a little concerned.

Recent Results:

TSH - 2.24
T4 - 18.2

A month ago:

TSH ? 1.31
T4 - 21.9

SIL has hypothyroidism and her thyroxine dose was increased preemptively when she was pg - so it does happen in RL and not just on the internet!

So if you're worried then follow up... when does your midwife get back from hols? IME midwives are much more helpful than GPs in pregnancy related issues.

Baby nephew was born healthy last week btw.
HTH

Thank you for the response and congratulations on your nephew :) It is good to know that it happens in real life, it is hard to know what happens compared to the internet!

i have hypothyroidism. My dose went up as soon as I told my gp i was preg from 50mcg to 100mcg. I've had a phone call today to tell me to up it again to 150mcg. Every 8 week checks sounds similar to what I'm having but I would push mw/ gp to discuss with you why they haven't upped your dose. (sorry, i'm no good at interpreting the numbers)
Do you know the name of your consultant? If so I would ring the hospital and speak to their secretary about your results - they will soon get consultant to contact you if they think it is an issue. Alternatively, just phone and ask to speak to one of the endocrine consultants.
Good luck

Hi, I have an underactive thyroid too. My GP was reluctant to up my dose pre emptively but did send me for bloods. My TSH was 2.6 and he also wouldn't act on that so I phoned my consultants secretary and told her I was concerned that my dose needed increasing, she spoke to the consultant for me and he advised to double my dose from 50 to 100. TSH is now 0.39 and he is much happier with that. The other thing you could do is ask your GP to send an urgent referral to the consultant for you so you can be seen sooner. I feel for you, it's a battle to get the right thyroid treatment in pregnancy. I think there are NHS guidelines that say you should have your dose increased and referred to a consultant straight away maybe you could google them and show them to your GP.

Thank you both - it's really helpful to have some information that suggests that it's not just me being a hypochondriac based on my research! I have got hold of my consultants secretary's number and am going to call tomorrow, hopefully they will be able to pass a message on for me.

Ciwi - I have looked at the information I think you're referring to and it's one of the sources that really made me feel like I needed this to be taken seriously. I printed it out and took it to my doctor but they said that that's not the current NHS protocol so they're not following it. Not very helpful...

I'm sure it will be fine and I'm just being overly concerned but it just feels like the stakes are too high to not make sure my treatment is correct. If it was just my health that's one thing but it's my baby's as well so it's stressful. It's such a common illnesss, I don't understand why it's not more understood by doctors during pregnancy.

rolling it is really stressful and frustrating isn't it. My other suggestion would be to contact the British Thyroid Foundation, I emailed them as they have a campaign on at the moment for better care in pregnancy and they were really helpful. Is this your first pregnancy?

I will go and check out the British Thyroid Foundation information - thanks for the tip :)

It's not my first pregnancy (my second) but my first I think I was just lucky. I was borderline hypothyroid before getting pregnant but my doctor didn't mention it or follow up during my pregnancy and so I was blissfully ignorant and thankfully my baby was fine. Soon after giving birth though my symptoms became really obvious (think it's common post partum) and that's when I finally got treated and since then have been hypothyroid. Fun :)

Rolling I have an underactive thyroid due to Hashimoto's and struggled to get a diagnosis and treatment from my GP. I used my private health insurance and saw a consultant and he advised me to up my dose of thyroxine by 25mcg as soon as I got BFP and then retest a few weeks later.

I totally understand your concern and although your levels look ok now (I think around 1 is optimal for tsh) this can change during pregnancy. I'd push for more advice. IIRC the baby is dependant on you until the thyroid gland functions on it's own at around 14 weeks. Good luck!

Hi, I'm a little bit different in that I have Hyperthyrodism with Graves disease and autoimmune antibodies however I'm on my 3rd pregnancy (29 weeks) so have been down this route a few times. The way my OB explained it to me is that the rise of hcg levels in early pregnancy can effect you TSH (in my case as hcg goes up TSH goes down) but won't necessarily effect T4 as the TSH is normally only an indicator that something might be about to change with the T4 so with hcg settling at around 12 weeks GPs can be reluctant to change doeses of medication before this. Fortunately I've been lucky in that my levels settle pretty quickly after the first trimester so I haven't had a medication change however I'm monitored with blood test (about every 4 weeks) and growth scans (an extra 2 at 28 and 34) as the main concern is that the thyroxine and antibodies passing over the placenta can effect the babies growth. Apparently this is quite rare for this to happen but they like to safe rather than sorry. To be honest I worried like crazy with my first but so far everything has gone ok with my previous 2 pregnancies and just had my 28 week scan with the third and again everything is normal so hopefully everything will turn out ok for you too.

Thank you both. Getawiggleon, I tried to use my private health insurance but they're not interested because it's a 'chronic disease' and 'pregnancy' so are ruling me out on both points!

Becci - that's great that all has been ok with your pregnancies, it's a worry isn't it, extra scans must be a good reassurance. I have my dating next week so looking forward to that!

Hi
I have an underactive thyroid but my dose wasn't increased. I'd had a blood test 3 months before finding out I was pregnant and then 1 straight after. Hospital had me being tested periodically throughout pregnancy (next one in 2 weeks) and mine has been fine. My dose is 75mcg per day. I did ring the hospital after last test and the nurse said my levels were fine (she did tell me what they were but I can't recall now). I'll ring again after my next test in 2 weeks.

Rolling I'm a hypothyroid mummy too. Please print this off and go back to your GP straight away to discuss. It's the official NHS guidance for management of pregnant, hypothyroid women. Your TSH should be between 0.4-2.0, so it does sound as though your dose should be upped a bit. Ask the GP to refer you to the endocrinologist at the hospital. You may well also be offered extra scans to monitor baby's growth as part of the monitoring for hypothoridism).

The official guidance says you should have a blood test at least every trimester ... I would just add that I would insist on having one done at 36 weeks - you really don't want to be running slow when baby arrives!!!

Oh, and congratulations

Hi mine wasnt raised during pregnancy but maybe it should have been cause it went underactive a few times I would ask about it as I now having growth scan you will prob have them and baby showing small the doctor told me it could be connected or could be something else dont want to worry you just wish I had better advice from the start

Thanks Blondie - I actually did print that off and take it to my GP but he said that isn't the protocol that the NHS currently use (I think this database is retired or something). It's so frustrating as I think the information on it is actually correct (based on other things I've read, am obviously not medically trained), I don't know why it's so hard to get GPs to take this seriously.

I have been referred to the endocrinologist OB consultant at the hospital but don't see her until 22 weeks. I left a message with her secretary but am still waiting to hear back. Arghh!

Hmm Rolling that GP's not sounding very helpful :( Is there another GP you can see? If not, can you ask him/her to show you the current guidance that they are working to then? Is it a month since your last blood test yet? If your TSH level is still ticking up then you can ask him/her to up your dosage until your consultant appointment?

Update.. I called the secretary of my consultant (who I don't see for another twelve weeks) and explained the whole story.

Eventually I got a call back and she wants to raise my dose by 25mg. So I'm pleased to have a resolution for now but a bit frustrated that I had to request both blood tests myself (including exactly what to test for) and then multiple phone calls to get the dosage raised. Guessing I will have the same fun in another six weeks!

Hi RITI

Normal clinical range levels at my hospital laboratory are: TSH: 0.27-4.20 and
T4:12.0-22.0

I am really shocked and angry to read your post. I thought it was common practice for all GP to prescribe at least a 1/2 dose extra, eg. I've been hypo for 20 years (100mg) and as soon as I told my GP it was upped to 150 no questions asked.

I would change my GP asap. Hope it all goes well. Glad you've got some resolution about your dose.

All the best

Mary

I've had hypothyroidism since puberty. When I was pregnant with my two DSs I had a blood test every 6-8 weeks and my dosage was increased from 75ug to 100 and later to 125ug, as a result of the blood tests not beforehand. BUT with my third pregnancy my levels stayed constant at 87.5ug throughout the pregnancy so you really can't predict whether you need extra or not you just need to get it tested regularly. Secondly, I was told by the Endocrine Consultant not to worry about the baby as it'll take all it needs first and so if there is a shortage it'll be you not the baby that goes short! As an aside I also had to be tested for Gestational Diabetes in all 3 pregnancies because when you've got one hormone imbalance you're more likely to develop another apparently. Good luck!

I have an underactive thyroid due to Hashimoto's that was diagnosed before I got pregnant. Once pregnant, I was tested at 7 weeks at my insistence and was referred to an Endocrine Consultant - who later said I was tested too soon! In any case, my dosage was never changed, as my hormone levels remained stable throughout my pregnancy, and I never developped gestational diabetes either.

As I understand it, what matters more than anything is your TSH reading as a high TSH level may interfere with the progress of the pregnancy (i.e. there is a higher risk of miscarriage).

They should monitor it during early pregnancy. They should NOT assume it automatically increases X amount as individuals vary so much. The first 20 weeks are the important ones - after that the baby has its own thyroid. Mine was checked about every 4-5 weeks until I was 26 weeks, and my dose increased from 100 to 125mg. Now they won't check it again.

I wouldn't worry about it too much - my endocrinimologist told me the only babies at risk are those whose mothers have extremely under/active thyroids and refuse the medication.