Extremely high TSH levels and declining T3/T4 levels in first trimester

[LaLaLuucy]

Hi all,

Just looking for some reassurance or more information. I was diagnosed with subclinical hypothyroidism back in 2018, but had my bloods monitored and they came back absolutely normal every time. These blood tests stopped around 2021, and I didn't really think anything of it.

I found out I was pregnant, a little unexpectedly at the beginning of January this year and it was flagged I had previously been diagnosed subclinical hypothyroid and I needed blood tests. Anyway its been a bit of a downhill slide from there - my initial results showed I had a TSH level of 11.8 but my T3/T4 levels were still just about within range, I was put on 25mg of Levothyroxine and I've just had my 6 week check in and my TSH level is now at 15 and my T3/T4 levels are at 4.9 and 3.8 so lower than the lowest threshold. I have an appointment tomorrow, I think to review my medication.

I've already had a letter about being consultant led, but my first appointment isn't until the end of March

Obviously I'm googling, I'm reading all of the worst case scenarios, we have our 12 week scan in two weeks (we had a private at around 5/6 weeks and we saw the sac and fetal pole) and I'm not excited I'm just terrified that all these things I'm reading about are going to happen. I guess I'm just looking to see if anyone else had extremely high levels of TSH and still had a healthy pregnancy/baby to help ease me through my doom and gloom anxiety spiral.

Thank you so much.

Hi,

I'm on levothyroxine for subclinical hypothyroidism, my TSH level only ever got around 4.89 before pregnancy and I was on 50mcg while ttc. It kept me below 2 for TSH. I was automatically put on another 25 mcgs when I got pregnant so now on 75 mcgs, so it sounds like you are being very under medicated. I don't have experience of high TSH during oregnancy but I found my levels dropped quickly with meds so if you get a stronger dose they should drop quickly.

Also on levothyroxine for subclinical, I had a 12w missed miscarriage before I was on any medication and my TSh level was 9 at the time. No idea if it was thyroid related or chromosomal, so please don't take that as cause and effect but I begged GP to put me on it after MC.

I agree with PP, 25mg a day is way too low given your TSH levels! I'm on 25mg one day and 50mg the next and I took matters into my hands when I got pregnant the second time round (I'm now 25w) as I was on the same 25mg dose and read that the British Thyroid association recommend you increase your dose as soon as you know you're pregnant which I did.

Sounds like they'll review your medication tomorrow and you can reduce your levels quickly with the right dose so try not to worry, hopefully easily fixed! Let us know how you go tomorrow x

25 mcg with TSH of 11.8 is shocking!! They should’ve put you on a higher dose! I had a subclinical form when I was first diagnosed, TSH of barely 6 and they put me on 50 mcg to bring TSH down. Having said that, 11.8 is not very high and your baby should be absolutely fine. I’d be worried if it was 30. I know there are a lot of scary things when you google it, I made this mistake a few months ago at the beginning of my pregnancy, but try to not worry.

I was on 37.5 mcg (50 was too high after a while and I had symptoms with 25) when I got pregnant last year (I’m 32 weeks now). Started researching this forum to see if I could find some information on being hypothyroid while pregnant. There were many posts saying that GPs are clueless and endocrinologists say you should up your dose by 25 mcg as soon as you find out you’re pregnant, so I started taking the full 75 mcg tablet from the beginning. I couldn’t get a GP appointment for ages so I did it myself. I only saw an endocrinologist for the first time at 20 weeks. He increased my dose by another 25 mcg, so now I’m on 100 mcg from 37.5 mcg!! My blood test results are perfect now. I’m really angry about the quality of care pregnant women with hypothyroidism get on the NHS. GPs are responsible for setting your dose until you see an actual specialist at 20 weeks, and they are completely clueless about the fact that you need much higher doses when pregnant because baby is using up your hormones! If you’re planning more children, with your second pregnancy I’d recommend you start taking a higher dose as soon as you find out you’re pregnant. Mine has tripled even though my hormones were balanced before I got pregnant.

@Kalanthe I couldn't agree more with your post, makes me so angry, and we shouldnt have to be self-dosing!

I have no Thyroid gland, due to complete removal when I was 12. First pregnancy was monitored all the way through (not in the UK) and never changed my dose. However at 8 weeks into second pregnancy my tsh level was through the roof, so was refereed to an endrochroligist. He immediately upped my dose (much higher than any of the levels you have referred to above) however this is likely because my body creates 0 natural thyroxine. He has stayed with me throughout my pregnancy and it has honestly made me feel so much more comfortable knowing he knows that my levels are correct. Will also see him for 2 appointments after I have delivered to get balance back. Currently 37 weeks. I have been recommend to go back to original dose, although he thinks my level was probably too low before pregnancy so wants to keep close eye

Hey, just wondering how quickly your levels dropped once you were on meds? I have a TSH of 6, and TTC. They've just put me on 75 micrograms but told me to get another blood test in 2-3 months time, but said, if I do happen to fall pregnant in the mean time, to let them know immediately. So I wondered how quick the meds actually work, and whether to give trying a miss this month or not.

@Imisscoffee2021 the message is directed to you - sorry, new to this platform!

Meds work quickly, if it took many months then upping it on pregnancy wouldn't have the desired effect quickly enough. They can test you earlier or you can buy a thyroid test kit online and post off to test it faster than the GP will test you :)

@LaLaLuucy hello, I hope everything worked out for you? I have hashimotos and desperately ttc, just looking for positive stories!

Hey! Yes everything was fine, they upped my Levothyroxine to 100mcg a day, my TSH levels dropped and we welcomed our beautiful baby girl 6 months ago 😊

I am still hypothyroidic post-natally however and will probably be on Levo for the rest of my life.

Good luck, I really hope everything works our for you 😊

@LaLaLuucy. Congratulations

it’s scary how some gp are clueless and fortunately others are very on the ball. It’s a lottery though which one you get

@LaLaLuucy many congratulations to you, you must be over the moon with your little girl x